Sarcoidosis Answers for Physicians, Nurses and Patients

Here at SarcInfo, between 2002 and 2004, we identified the cause of Sarcoidosis, and successfully trialled a curative antimicrobial therapy. During 2005 and 2006 the US FDA designated the antibiotics Clindamycin and Minocycline as Orphan Products in the treatment of Sarcoidosis, and studies are ongoing elsewhere.

For information about this breakthrough, please post your questions at the current study-sites of the Autoimmunity Research Foundation.
 
This archive of the historic study is maintained by volunteers from the Foundation. The material here provides useful background, but most of this site is now out-of-date.

 

** Patient Tutorials **

 Click here to read "WHY DID I GET SARCOIDOSIS? WHY ME? 

  Click here to read "REMISSION IN SARCOIDOSIS"  

 How a Pathologist can see Bacteria causing Sarcoidosis 

"How does Doctor measure my ACE, and my D-metabolites?"

 Weaning from Prednisone

 Protecting your eyes in Sarcoidosis

Vit.D and Calcium in Sarcoidosis

Hypervitaminosis D Symptoms    The SarcInfo F.A.Q.

Medical Abbreviations          CBC Radio Show

Protocol Phase 1-First 3 months

  

** Papers for Physicians **

Antibacterial Therapy induces Remission 

Implications for Autoimmune Disease 
(Here is Fulltext preprint)

Antibacterial mechanisms for ARBs 

Antibiotics in Sarcoidosis- The 1st Year 

Rationale for abx in Sarcoidosis 

1,25-D and Angiotensin II

"New Treatments Emerge.."

Jarisch-Herxheimer in Sarcoidosis

Vit.D and Calcium in Sarcoidosis

Protocol Phase 1-First 3 months

The NIH ACCESS Study finds Sarcoidosis does not go away - Click here to see, and print, the brochure


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 Archive to 7/29/2003 -ARB therapy-nuts and bolts
Author: Karen (---.brsr6.xdsl.nauticom.net)
Date:   11-27-02 19:33

Trevor,

After reading this site, I understand the "D" issue and have tried to eliminate it from my diet and excessive exposure to light.

I also understand that Minocin is needed to kill the bacteria in the cells.

What I have missed is the importance of ARB therapy. What exactly is it and why is it needed? Is it needed in conjunction with the Minocin? Could you please explain it in layman's terms? What drugs and how many are used in this therapy? Side effects, if any?

I need a better understanding of the ARB therapy before I see my internist in two weeks.

Thanks,

Karen
 
 Re: ARB therapy-nuts and bolts
Author: Admin (---.vnnyca.adelphia.net)
Date:   11-28-02 13:31

Karen,
Angiotensin Receptor Blockers (ARBs) are a class of extremely selective drugs, targeting just one thing, the receptor through which Angiotensin II reacts with other molecules. The ARBs job is to bind at the receptors for Angiotensin II, thus blocking the ability of Angiotensin II to bind there. The ARB is inert. There is no reaction. If the Angiotensin II had mated to the receptor it would have produced a cascade of inflammatory cytokines. Below is a 3-D view (from UCR) of the Secosteroid 1,25-D receptor
http://www.sarcinfo.com/norman1.gif

It's not the same as Angiotensin II, but I wanted to give you some idea of the complexity of these molecules, and of the ways they interact (besides which, it looks neat)
On the right you have the (blue) 1,25-D molecule entering the VDR and binding with it to start the chemical reactions.

The first thing you can see is that these molecules are very complex. Trying to design a drug such as an ARB, is made even harder by the fact that these molecules vibrate, or change their relative shape, due to molecular forces.

So it should really come as no surprise when I tell you that not all of the ARBs are equally effective at locking out Angiotensin II from releasing its inflammatory cytokines. Some work better than others.

ARBs have been incorrectly developed and marketed as "Blood Pressure" drugs --> which they are not
It was really a surprise to their developers that ARBs did not attack hypertension as effectively as the scientists had hoped. Older drugs, like the ACE Inhibitors and Calcium Channel Blockers, do a much better job at reducing blood pressure. ARBs are only recommended for MILD cases of hypertension, and usually used in conjunction with a more effective BP drug.

But Angiotensin II is a key element in the inflammatory process. and ARBs are proving effective at reducing Diabetic Retinopathy and Nephropathy, in addition to reducing Heart Disease and Strokes. These conditions are both caused by a vascular inflammation very similar to that in Sarcodiosis. Unfortunately, your Doc may not have found out about this yet

So what have ARBs to do with Sarcoidosis?
Firstly, the obvious connection is that any drug which can reduce the amount of retinopathy and nephropathy is most certainly of interest. But there is more than that. We (Liz and I) have described how Angiotensin II plays a key role in the inflammatory granuloma, and found that if you block Angiotensin II from binding at the site of the inflammation you also reduce the level of 1,25-D being generated. Thus the symptoms of Hypervitaminosis D are reduced. We also suspect, but cannot yet prove, that the long term damage done by the granuloma to the tissue in which they reside will be reduced. But at this point you can hang your hat on the ARBs reducing your fatigue and other symptoms, and that is probably good enough

But Sarcoidosis is such severe inflammation that you have to block every single receptor

http://www.sarcinfo.com/benicar.gif

Here is a graph of the dosage of Benicar, the most effective of the ARBs, against blood pressure change. You can see that almost all the reduction in blood pressure is achieved at a relatively low dose (around 40mg/day). But you can also see that the blood pressure continues to reduce (by incrementally smaller amounts) as you increase the dosage. This is because as the dosage gets higher there are more ARB molecules available to bind at every one of those pesky receptors.

Doc will be familiar with dosing the ARB for all his hypertension patients, at the 40mg once-a-day level, which can be catastrophic for Sarc patients. We documented side effects from Psychedelic Dreams to Neuropathy as a result of inappropriate ARB dosage. Read this paper if you want to know more background. Our most complex manuscript, "New treatments emerge as Sarcoidosis yields up its secrets" goes into the inflammatory chemistry in more detail.

We found that it is critical to dose the ARBs frequently. For Benicar (olmesartan medoxomil) there is safety data that supports twice daily dosing at 40mg every 12 hours. I suggest you ask Doc to sign off on trying that, and then change to the more effective 40mg every 8 hours after he (and you) are comfortable with using the ARBs as an anti-inflammatory.

Diovan (Valsartan) also works fairly well, use it only if Benicar is not available in your country. 80 mg every 8 hours was what we found best (you are going to need a cooperative doctor to prescribe Diovan at these dosages). Diovan tends to leave you with Sinus congestion, and I found that it gave me ringing in the ears. But it is much better than nothing.

Finally there is Avapro (Irbesartan). Use it only if Diovan and Benicar are not available where you live. I found 150 mg every 8 hours worked fairly well, but I had problems with the Avapro not absorbing from my stomach once I started to get a little "hyper D". 'Your mileage may vary'.

There are other ARBs, including Atacand and Cozaar. I tried Atacand (Candesartan) but couldn't get it to work. Don't let Doc talk you off the proven 3. Do your best to get the Benicar.

Migraines and Headaches
A new study has been released which proved that ARBs are very effective against headaches, even in the general population. Print it out for Doc and maybe that will be a factor in persuading him/her to prescribe ARBs for you. This study was paid for by the makers of candesartan, and so that is the ARB they used. Make sure that Doc actually prescribes one of the top three, and that the dose is split into 8 hour traunches so that it is effective for you, the sarcoidosis patient, who has special needs due to the large number of extra Angiotensin II receptors that are present in your inflamed tissue.

Safety
All the ARBs are some of the safest drugs in the formulary. They are very targeted, do just one job, and do it well. The predominant 'side-effect' from taking an ARB is that your blood pressure will drop. You will have to manage this. You can see that Benicar is supposed to get a maximum blood pressure reduction of about 15 mm Hg. In my case, because it and the Minocin controlled the underlying sarcoidosis, a huge drop in my blood pressure from 150/95 to an average of 115/65 was actually what I experienced. However, people that start off with blood pressures closer to 'normal' (120/60) will not experience such a big reduction in their BP. Nevertheless, I suggest you buy a cuff and measure yours, at least until you 'get the feel of it'.

Summary
Those patients that are mildly hypertensive can have Benicar precribed for that hypertension. If you take Benicar, at least 40mg every 12 hours, you will find it will reduce your fatigue and other 1,25-D symptoms.

If you are not hypertensive your Doctor will need to prescribe the drug "off-label". Some doctors will not do that.

You may require increased dosage if you need to spend time out of doors. Use of an ARB will not allow you to spend all of your time out-of-doors. But it will increase your threshold to the point where a little sunshine exposure can be easily tolerated. You still gotta wear eye protection

..Trevor..                                                   (C) Copyright 2002, SarcInfo.com
 
 Re: ** ARB therapy-nuts and bolts
Author: Karen (---.brsr6.xdsl.nauticom.net)
Date:   12-13-02 14:47

Thanks Trevor. Do you start this at the same time you are on Minocin?

Karen
 
 Re: ** ARB therapy-nuts and bolts
Author: Admin (---.vnnyca.adelphia.net)
Date:   12-13-02 15:00

Karen,
Stabilize your symptoms on ARBs before you take the antibiotics. That way you will be better equipped to handle any herxheimer.

Also, when you get your D data back, you will get a better idea of the degree of herxheimer to expect. Generally I would expect little herxheimer difficulaties for someone on Benicar at least 20mg every 8 hours with a 1,25-D below about 35 pg/ml. But the 35 pg/ml is really only an intelligent guess right now...

..Trevor..
 
 Re: ** ARB therapy-nuts and bolts
Author: Ms. Sam (209.109.245.---)
Date:   12-14-02 14:52

Trevor,
I am also hypertensive , my normal range was 140/90, but only 3 days after starting pred 40mg a day, I was hospitalized with a reading of
180/100, that was in April of this year. I am happy to say that I have weaned my self off the pred 2 weeks ago, but I can slowly feel my symptoms returning. My internist prescribed Diovan HCT for my hypertension, but It didn't lower my pressue very much. He also gave me an additionl water pill and Norvasc, but the pressure remained high. Since coming off pred, it has already gone down to 150/94. I said all of that to ask this question, do you think the Diovan HCT (160/12.5) will help me if I cut it in half and take it every 8hrs? I have about six months worth of the drug and I would hate to waste it.
Sam
 
 Re: ** ARB therapy-nuts and bolts
Author: Admin (---.vnnyca.adelphia.net)
Date:   12-14-02 16:22

Ms Sam,
You don't want Diovan HCT. It has the diuretic hydrochlorothiazide (HCT) in it. This will have an unknown effect on your renal system. You really want the Diovan without the HCT.

Doc might supplement the ARB with a beta-blocker or an ACE inhibitor if your BP remains too high, even after 80mg Diovan every 8 hours, or the more effective treatment of 40mg Benicar every 8 hours. It takes a while for things to stabilize.

But your BP will not really drop until you get control of your Sarc inflammation. In my case it started at about 150/95 and is currently 105/55 to 120/65, or so. You really need to have your D metabolites tested so you can get an estimate of how well your kidneys are controlling the generation of 1,25-D

I would recommend you focus on controlling the sarc rather than worrying about the cost of the drug you are wasting. I know it is tough, but once you get rid of the sarc inflammation you can start living a normal life again... and, personally, I think that is priceless....

..Trevor..
 
 Re: ** ARB therapy-nuts and bolts
Author: Sylvia (---.proxy.aol.com)
Date:   12-17-02 08:52

Hi Trevor, my husband has been on 40mg of Benicar 2xday for almost 2 weeks and there hasn't been any change in his BP. He even added back in 150mg of Avapro 1xday, besides for the 40mg Lotenin, 40mg Lazix, & .2mg Clonidine. The BP just doesn't come down. He is now down to 3.5mg Prednisone a day. We had read on Benicar that it should be effective by 2 weeks. Any ideas? Sylvia
 
 Re: ** ARB therapy-nuts and bolts
Author: Admin (---.vnnyca.adelphia.net)
Date:   12-17-02 09:23

Sylvia,
As I said in the message at the top of this thread, IMO, Benicar does not depress blood pressure a lot, but has a bigger effect on inflammatory biochemicals. I know it is being marketed for hypertension, but it is only approved for MILD hypertension by the FDA. So your husband should not be surprised if it is not affecting BP in the short term, and you should not be relying upon it to lower chronically elevated BP (what is your husband's BP, by the way?)

In the long term, as it works on the inflammation that is at the cause of the BP problems, then the Benicar will prove most effective, but not immediately. But it should be helping pain and other symptoms (when due to 1,25-D) already. Within days of starting. Else I suggest asking Doc to change it to 40mg every 8 hours.

Avapro is not going to have any additional BP effect once adequate Benicar is in place (read this)

Looking at the other medications:
Lasix (Furosemide) is a diuretic - IMO probably relatively ineffective in sarc, unless the kidneys are in good shape
You can read about Clonidine here
Lotensin is an ACE Inhibitor

I am not an expert in hypertension. However, IMO, the ACEI probably will not add much to the ARB (Benicar). I would expect a Beta Blocker to have been used to control the blood pressure, but Doc apparently used Clonidine, so you need to ask him about it. As I said, I am sure Doc knows more than I do about treating hypertension...

..Trevor..
 
 Re: ** ARB therapy-nuts and bolts
Author: Sylvia (---.proxy.aol.com)
Date:   12-17-02 22:51

Thanks, he sees the doc tomorrow. His BP is running about 153/92 after almost 2 weeks on Benicar. It was slightly higher (164/94) before the Benicar.

Apparently, the doc has mentioned going back on HCTZ, but it hasn't happened. I don't know what the next plan will be, especially since his last visit was a bit strained. She may not be willing to increase the Benicar.

By the way, what does IMO stand for????
 
 Re: ** ARB therapy-nuts and bolts
Author: Admin (---.vnnyca.adelphia.net)
Date:   12-18-02 03:49

Sylivia,
IMO stands for "in My Opinion".

I am not sure how effective HCTZ is in Sarc Patients. The kidney functionality is so abnormal in Sarc. Why might she not increase the Benicar? The FDA safety data allows that dosage (40mg q8h). Your husband is very sick. I just can't understand the logic of some docs.

But as I said, the key thing is to get any inflammation down. The key thing is to get the D metabolite blood work done so you can find out how much inflammation you are dealing with.

..Trevor..
 
 Re: ** ARB therapy-nuts and bolts
Author: Sylvia (---.proxy.aol.com)
Date:   12-18-02 06:25

Trevor, he had the blood work done at the end of Oct. His ratio was 2.26. Should we get the blood work done again pretty soon or wait until March when he has been off the prednisone for 4 weeks. The plan is to be off the Prednisone on 2/10/03.

We probably need to find a new gp but we live in a small town. Most of the gps are over worked and burned out. A year ago I called every gp that was recommended to me as being good. They all refused my husband because his health issues were too complex. We had to resort to a clinic with a rural residency program out of Portland. The gp has been pretty good in dealing with the diabetes and she has been a good listener. Her attitude changed quite a bit when we began bringing info from this web site to her. She acknowledges that he is sick and that she doesn't have the answers but isn't receptive to other ideas. It might be the setting she is working in; she is under the authority of the main doctors in the practice.

It is pretty frustrating. You're a guinea pig for a year or two while the doc tries out all of his/her theories/meds and then when nothing really works, they decide it is all in your head. Right now we feel like we are alone, trying to find answers to fix the problems. A typical story, isn't it?

Since my husband has been off the Vit D, his head has cleared. There is a noticeable difference. His endurance has improved some. His muscles are still causing him a great deal of pain though and walking more than a few blocks doesn't happen anymore. He often rides a scooter around a store. His hip causes him a great deal of pain but he has conflicting medical opinions on it and so nothing is being done. He continues to go to the gym and feels great for hours afterwards but the next day is usually VERY painful. He concentrates on his upper body at the gym but does some lower body exercises too, especially in the pool. You have said that it can take a long time to recover and I think of the 32 years he has been diagnosed with sarcoidosis and the 22 years we have been married and as much as we wish for a speedy recovery, well, a year sounds pretty good right now.

Anyway, thanks for being there.
 
 Re: ** ARB therapy-nuts and bolts
Author: Admin (---.vnnyca.adelphia.net)
Date:   12-18-02 06:53

Sylivia,
Yes, a year is a pretty good deal, overall.
I guess I found ARB therapy in 1999, which stabilized me until the antibiotic therapies did the job in 2002. But even then, it takes a long time to knock down each and every one of the bugs accumulated over all those years.

If his D ratio is 2.26 there is no need to measure it again until things stabilize. It is already fairly low. The pred will be depressing the measurement a little bit, but clearly the overall health and drug status has to be improved before any decent remission will be achieved.

The muscle pain could be from the Prednisone. Hard to say. Only way to tell is to wean. Hopefully the Benicar will help him do that. He is not on any statins, is he? In any case, his BP right now is not overwhelmingly high, IMO (153/92), considering the diabetes and eveything else. I would focus on stabilizing things overall, and your plan looks a good way to do that.

Sorry if I am coming down too hard on Docs these days. You are dead right about them wanting to try it their way first. And after that many then lose interest in helping, so you have to start again. Sheeez.

Still, it is good the Vit D rationing has helped him feel better. It is amazing how many people have been helped just with that simple step.

..Trevor..
 
 Re: ** ARB therapy-nuts and bolts
Author: Kathleen (65.121.96.---)
Date:   12-18-02 17:43

Sylvia, I started taking Benicar 1 week ago; this is in response to extreme Herxheimer effects after the minocin/antibiotic - I had terrible chest pain and tachycardia. My blood pressure was fairly normal at that time - I believe 120/80 - but my pressure fluctuates constantly - sometimes the systolic is high; sometimes the diastolic is high; I never know.

After 1 week on the Benicar, as well as a beta blocker, Toprol-XL, my pressure was 133/89; (the first reading errored out at 155/unable to read diastolic (using hospital equipment).

My pressure has really not been affected by the Benicar - it still does whatever it wants, whenever it wants! The Toprol also does not control it - nor does it control my heart rate - which can be resting 95 one day, and resting 65 the next.

I guess my point is that while these medications are to protect my heart, what really needs to be done is to get rid of the real problem - the sarcoidosis inflammation.

Also - I was on and off low dose prednisone for over a year, and then high dose prednisone (60+ mg/day) for a year - I have now been off for 1 year (except for a course of IV solumedrol in September); I have still not returned to normal at all from the prednisone side effects. My pressure and heart rate, as I said are uncontrollable (affected by prednisone?); I still have the weight, the purple stretch marks, the buffalo hump (tatonka!) that attaches itself to the neck/cervical area, etc. So possibly, the steroids are still affecting his pressure also...

Best of luck to you and your husband - I know how the small town thing goes - I was lucky enough to find a new physician who had just moved to town....

Kathy from Wyoming
 
 Re: ** ARB therapy-nuts and bolts
Author: Kathleen (65.121.96.---)
Date:   01-04-03 16:07

Trevor -

I am on my 3rd dose of 40mg Benicar TID - and I am miserable - are there any side effects, or any getting used to a higher level of meds, or could I just be flaring again?

I have chest pain, but extreme weakness, radiating from my left chest, very much like I did after taking Minocin.

Thanks for your help!!!

Kathy in Wyoming
 
 Re: ** ARB therapy-nuts and bolts
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-04-03 16:31

Kathy,
What were you on before? BID? 20mg? nothing?
..Trevor..
 
 Re: ** ARB therapy-nuts and bolts
Author: Kathleen (65.121.96.---)
Date:   01-04-03 18:10

Trevor -

I was on 20mg TID. I am starting to feel a little better - less weak; I forgot that last night, there were firecrackers (either that or a heck of a gunfight!) - they were set off at 0100, 0200 and 0300 - must have had New Year's late! They were the really loud white ones - just one block away; and each time it woke me out of a sound sleep - my heart is hypersensitive when I am startled; I guess it could just be that it was overstimulated and weaker today. I'll keep on the Benicar - eating helps also, and I am really pushing fluids.

Thanks! Kathy
 
 Re: ** ARB therapy-nuts and bolts
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-04-03 18:36

Yes, there is a big difference between 20 and 40mg TID. You will also find that extra tablets (40mg prn) will give you control over surges (e.g. due to herxheimer or unexpected sunlight encounters). 40mg q8h was just about the minimum effective blockade for me, but your mileage may vary...

Every time your 1,25-D varies, either up and down, there are profound symptomatic changes. Everything in your body, from PTH to bone regeneration, is keyed to this hormone in one way or another

..Trevor..
 
 Re: ** ARB therapy-nuts and bolts
Author: Kathleen (65.121.96.---)
Date:   01-04-03 18:41

Trevor -

It seems that every time I feel better, and then get worse again, the chest pain and weakness are worse. The herxheimer effects were pretty ugly; and it feels like that again, but not quite as bad. Any exertion, and especially something that engages my "flight or fight" system leaves me feeling weak, bruised and swollen - like there is cotton stuffed in my chest.

Hopefully staying indoors for the next couple weeks and keeping on the Benicar will help relieve this!

Had you found that each time you "relapse" it seems to be worse...

Thanks, Kathy
 
 Re: ** ARB therapy-nuts and bolts
Author: Meg (---.188.228.34.euc.wi.charter.com)
Date:   01-04-03 18:58

Kathy,

I had a worsening of my symptoms when I started taking the Benicar. Trevor told me that this sometimes happens as the D-level comes down, sort of like withdrawal. At the end of the first week, I was feeling much better.

Hang in there,

Meg

P.S. I just returned from dinner out at a tavern. I stubbornly wore my sunglasses but no one said anything. Do you suppose they thought I was a movie star?

 
 Re: ** ARB therapy-nuts and bolts
Author: Kathleen (65.121.96.---)
Date:   01-05-03 11:27

Meg -

I had forgotten that rebound effect - it was addressed earlier in the thread!

Thanks for the reminder! I have ordered the glasses, sunglasses and tinted, hats and shawls - definitely the movie star look! Maybe we'll start new trends...

Thanks! Kathy
 
 Re: ** ARB therapy-nuts and bolts
Author: Kathleen (65.121.96.---)
Date:   01-05-03 16:29

Trevor -

What is the difference between the withdrawal symptoms related to Benicar, and the Herxheimer effects related to Minocin? I know they are caused differently (I think) - do they feel the same?

Thanks, Kathy
 
 Re: ** ARB therapy-nuts and bolts
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-05-03 18:10

Kathy,
Here the conundrum: HYPOvitaminosis D makes you dizzy. HYPERvitaminosis D makes you dizzy too.

Our "Angiotensin Hypothesis" describes a biochemistry in which the ARB, such as Benicar, causes less 1,25-D to be generated within the inflamed tissue. While this hypothesis is not yet proven, nobody has been able to shoot holes in it yet, either, and it has been confirmed in-vitro, in the lab.

1,25-D is a hormone which controls so many other things in our body that when it changes concentration other profound things (like PTH) have to adjust. And they don't do that instantaneously. Or in any orderly regular fashion.

When you get your 1,25-D down to 20-25 pg/ml you will be able to sense the D surge. It is quite characteristic after a while, and you can increase your ARB dose to 'knock it down'.

Herxheimer usually gives that same D surge, just like accidentally eating the egg-yolks in Tapioca pudding
But Herxheimer can be very large in magnitude if a lot of bugs are killed all at once. With egg-yolks at least you can control the exposure.

So: a practical example: I am hovering somewhere between 13 and 25 pg/ml (I hope). I take Clarithromycin, and I get herxheimer. This time I think it is a HYPO surge. I get an intoxicated dizzyness for the day. Its such a nice feeling ... I would like it EVERY weekend (never had it before) Two weeks later I take the SY series Bactrim. Herxheimer again, but a HYPER surge - not enough to give dizzyness, but enough to make it feel as though the blood is rushing to my feet and my skin is being burnt all over by red hot pins.

So many sensations - it is really tough to learn and interpret them. There really are no hard and fast rules, except that as your 1,25-D gets lower the Neuro symptoms - irritability and loss of concentration and fatigue - all these seem to drop very quickly (2-4 hours) and rise just as quickly upon exposure. The irritability (rather than a normal calm cosy lazyness) is the key symptom I use to interpret any changes to homeostasis. Luckily, very little upsets me these days - just a little nice herxheimer from time to time

..Trevor..
ps: I don't take any regular antibiotics any more, just short 3-4 day courses if I come across some new, promising antibiotic. Only three have qualified so far - all have scored 'direct hits'.
 
 Re: ** ARB therapy-nuts and bolts
Author: Meg (---.188.228.34.euc.wi.charter.com)
Date:   01-05-03 18:32

Trevor,

I have learned to love my Herxheimer's too! I took a Minocin 5 hrs. ago and as I write this I feel weak and warm and woozy after having felt fine and energetic all day. It's a wonderful feeling knowing that the antibiotic is working and I'm confident I'll feel well in the morning. Each Herxheimer feels a bit different. The last was mostly irritability and achiness. But I welcome these reactions.

Thank you for making me feel crappy but happy!!

Meg
 
 Re: ** ARB therapy-nuts and bolts
Author: Kathleen (65.121.96.---)
Date:   01-05-03 18:50

Trevor and Meg -

Thanks - that make me feel less anxious about all this - right now I am just very restless - it's (literally) hard to focus, and I can't stay in one place very long.

I have to say that when I took the Minocin, and before I got the bad chest pain, it did give me a sense of yummy - like a narcotic (like it felt before I was allergic to ALL of them!) - very nice floaty feeling.

This is not like that! This is yucky (the technical term), and cranky and nerve-racking. But I am going home - to stay out of the lights and the sun - and try to reduce the vitamin D.

Thanks and see you in two weeks! Kathy
 
 Re: ** ARB therapy-nuts and bolts
Author: Susan (206.74.142.---)
Date:   01-06-03 07:08

I wanted to let everyone know that I have weaned myself off of Prednisone since being prescribed Doxycycline. I wasn't taking much - approximately 32 mg of Medrol per week - but I was having a large amount of pain in my left shoulder, neck, arm, and back. I kept asking the doctor if the Medrol could be causing the problem, and she kept telling me, "no, it's the sarcoidosis." Well, after being in significant pain for a few weeks, I am finally off the Medrol and..guess what? I have no pain!

The books that I have read all document how painful it is to come off of Prednisone - why don't the doctors know that?

Anyway, I'm still taking the Doxycycline,100 mg every other day, and will be for another 30 days or so. I haven't started taking ARB therapy yet. All I know is that my pain seems to be gone, and that's great!

I do have a question - has anyone experienced EXTREME constipation when stopping the Prednisone? No matter what I take, my bowels seem to not be functioning. I hope this goes away!!

Thanks for all the info!!
 
 Re: ** ARB therapy-nuts and bolts
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-06-03 08:27

Susan,
I experience EXTREME constipation from the antibiotics. The stool tends to 'dry out'. That's one reason why I am just taking "top-up" antibiotics every few weeks rather than maintaining a continuous regime (I think 'top ups' are probably better if you are just trying to maintain remission - but that is another topic). I can control the constipation only with Dulcolax laxative (and lots of Lactic Flora). I take them whenever I take a course of antibiotics. The drugs do work well, but Dulcolax can be addictive, and I don't want to use it more than a day or three at a time.

..Trevor..
 
 Re: ** ARB therapy-nuts and bolts
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   01-06-03 08:50

Well, Susan,

I declined the prednisone therapy for sarcoidosis, but I've certainly experienced that constipation. Constipation is a symptom of hypervitaminosis D. Look at this list of possible side effects from vitamin D compounds on Medline. (Scroll all the way down to "Side Effects of this Medicine. (Isn't it strange there is more recognition of this condition in vitamin D medications than sarcoidosis???))

I can report that now, after almost four months of taking Minocin, the constipation seems to be under control. Every step of improvement helps, and this is a big improvment for me! Before taking Minocin, the constipation that I've had for years waxed and waned with my other sarcoid symptoms. I often resorted to enemas when drinking lots of water and eating 20 or more prunes per day didn't help. Trevor reported good results from an over-the counter remedy.

So, the good news is that I've also had that, and the constipation just stopped after months of taking Minocin. When taking antibiotics, though, I had to be diligent about taking supplemental probiotics for my gastrointestinal track, several times a day. Minocin therapy provoked extreme constipation for me.

Belinda
 
 Re: ** ARB therapy-nuts and bolts
Author: Susan (206.74.142.---)
Date:   01-06-03 10:32

Belinda, thanks for your reply. Can you tell me which OTC medication works for you? I also am eating prunes by the box and drinking Metamucil - all to no avail!!
 
 Re: ** ARB therapy-nuts and bolts
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-06-03 10:47

Susan,
The drugs I mentioned are OTC drugs, no prescription necessary at the doses they sell OTC.

Take a look at this thread for more info

..trevor..
 
 Re: ** ARB therapy-nuts and bolts
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   01-06-03 19:25

It's amazing to me that my long-term constipation may be attributed, at least in part, to sarcoidosis. Is there any body function that this disease doesn't touch?

Anyway, I thought I'd share that, after trying every constipation prevention method other than stimulants known to man with only limited success, I have, for the past 2 yrs been regular with the use of magnesium oxide tablets. Your amount will vary and you need good kidney function to use large amounts of magnesium, but 500mg/day is a start.

Since starting the Minocin, I've been on the alert for an increase in constipation but it doesn't seem to have affected me that way. I also take probiotics regularly and have for a long time. And one should continue to eat a diet high in fiber, drink enough water and exercise regularly regardless of the constipation remedies you have to resort to.

Meg
 
 Re: ** ARB therapy-nuts and bolts
Author: Christian (---.ipt.aol.com)
Date:   01-15-03 17:33

Trevor,
My ACE is 26, my D ratio is 2.1, 1,25 D is 55.3 pg/ml and 25 D is 26.8 ng/ml. I know I want and need Minocin, but I'm not so sure with ARBs. Do you think I can rough it out without ARBs? Do I have to expect strong Herxheimer with my current condition?

Thanks again, Christian
 
 Re: ** ARB therapy-nuts and bolts
Author: Christian (---.ipt.aol.com)
Date:   01-15-03 18:03

Trevor,


So if I understand clearly, antibiotic therapy is used to kill the bugs and the ARBs therapy is used after as a preventive measure?


Christian
 
 Re: ** ARB therapy-nuts and bolts
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-15-03 18:20

Well, not really.

ARB therapy interrupts the inflammatory cycle. So it offsets your genetic susceptibility to have a soaring 1,25-D value. Whether you have active inflammation or not it will keep the D from surging. Which will give a higher quality of life. Lower neuro problems, no headaches, lower vasculitis.

But in addition it blocks the (internal) Angiotensin II that is part of the 1,25-D inflammatory cycle and reduces vasculitis and inflammation in eyes, kidneys, and etc, that would otherwise be caused by the high level of 1,25-D.

Actually, they are the same thing, except I have 'proven' the first paragraph along with the biochemical theory, and others have 'proven' the second without really understanding 'why'... Maybe one day all of us will get together without bickering and merge this knowledge

..Trevor..
 
 Re: ** ARB therapy-nuts and bolts
Author: Christian (---.ipt.aol.com)
Date:   01-15-03 18:26

Ok I think I get the idea. Is there any reason why both therapy cannot be initiated at the same time?
 
 Re: ** ARB therapy-nuts and bolts
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-15-03 18:35

When you start ARBs it is going to reduce the level of that 1,25-D, and, starting from a high level of 1,25-D like yours, you will be going through a "withdrawal" phase from a chemical on which your brain has become dependent. This can cause quite a lot of pain and suffering while the 1,25-D is falling for a few weeks.

So do you want that and herxheimer both at once? Probably not a good plan, IMO. Get the ARBs in place first, that will make the herxheimer less of a problem.

..Trevor..
 
 Re: ** ARB therapy-nuts and bolts
Author: Christian (---.ipt.aol.com)
Date:   01-15-03 19:12

Trevor,

Thank you very much for your advice. I have now to find a strategy to sell both therapies and I'm not so sure how to do it. In any case, if Docs don't accept both, I know I'm going to need the Minocin and I'm not going to leave without it. I guess that if I don't have the ARBs, I will have to be extra carefull , take it easy, and listen to my body. Maybe it's better to start slowly like Lana with 50 mg and see how it goes. Remission is still possible without ARBs, it's just more painfull to get there, is it?


1,25 is not regulated in the kidneys of sarcoidians and ARBs are doing that job, am I right?


Do we know why there is a dysfunction of the kidneys?


Thanks again

Christian
 
 Re: ** ARB therapy-nuts and bolts
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-15-03 19:24

Christian,
Actually the kidneys seem to be functioning correctly, but the extra 1,25-D is being made outside the kidneys in the inflamed tissue. It is here that the genetic predisposition has short-circuited the mechanism that normally stops 1,25-D production from going too high. So the inflamed tissue out-produces the kidneys, causing all sorts of imbalance in our bodies, from our brains to our thyroid to our bones.

The ARBs will correct any harm done by vasculitis and make sure no more takes place, They will cut the risk of stroke, myocardial infarction, retinopathy and nephropathy (kidney disease).

Try Doc out, and print out the British Medical Journal article for him to read. It is a little simpler to understand than some of the other papers, even though its thrust is at public health, not pulmonologists.

The biggest problem is that Docs worry about your blood pressure getting too low. Truth is they have no idea what defines "low" for a sarc patient on Angiotensin Blockade anyway. Meg has reported that her blood pressure can fall very low and it doesn't seem to cause any problems. That is my observation. Three years ago, when I started ARBs, my BP was about 160/95. Now it ranges from 105/55 when I don't go outside to 120/70 when I go out with the family for the afternoon. Very little of the drop from the old 160/95 to the current 105/55 is due to the ARB, most is due to the antibiotic-induced remission.(your mileage may vary...)
..Trevor..

..Trevor..
 
 Re: ** ARB therapy-nuts and bolts
Author: Christian (---.ipt.aol.com)
Date:   01-16-03 06:38

Good morning Trevor!
I have a few more questions about ARBs and Sarc

1) If you kill all the bugs, why ARBs are usefull afterwards? Because from what I understand, ARBs disrupt the inflammation cycle and if there is no more inflammation to disrupt, why continue the therapy?

2) Because of your genetic sarc predisposition, will you take ARBs for the rest of your life?

3) Why the immune system of sarc patient seems to be in a loop and cannot get rid of these bugs? Also does it mean that every time the body will be in presence of these bugs, it will response in the same fashion. i.e production of granulomas that take years or for ever to clear out?

4) Do we know what part of the human genome has a mutation? Are people working on that?

5) Should sarc patients have their metabolites check routinely after remission and should they have a "maintenance" or "preventive" Minocin run to eliminate the critters that start to accumulate after remission?

6) Why some people have normal ACE levels (like myself 26 U/L) and have sarc. Is there an explanation for that?

7) I don't know if the ACE that is measured has some link with the ARBs therapy. Could you tell me?

Thank you again for sharing your knowledge and wisdom with us
Christian from coooooold Canada
 
 Re: ** ARB therapy-nuts and bolts
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   01-17-03 22:52

I began taking angiotensin receptor blockers (Benicar) four days ago. I am continuing to avoid sunlight and vitamin D foods, and I have been on Minocin for four months.

My blood pressure normally runs on the low side, ranging 95-105/60-70, so I wanted to let you know my results from taking the ARBs, 40 mg every 8 hours.

My blood pressure the past couple of days has been:
1/16/03 9:30 am 96/66,
1:50 pm 83/57
1/17/02 11:57 pm 96/60

The Benicar stopped my chest pain; my face and hand pain (which I have in response to cold) is almost completely gone, and I have more energy. I am feeling great! I have felt no ill effects from taking Benicar. This has been a breeze.. nothing at all like weaning my body off of high levels of 1,25-dihydroxyvitamin D or the Herxheimer response from beginning Minocin.

Belinda
 
 Re: ** ARB therapy-nuts and bolts
Author: Caroline (---.win.org)
Date:   01-21-03 22:15

I am wondering if benicar would cause the need to replenish potassium or salts? Although I haven't been taking it a week, I am craving salty foods and experiencing leg cramps. I normally would crave sweets and was only troubled by leg cramps due to steroids, which I am not taking.
Caroline
 
 Re: ** ARB therapy-nuts and bolts
Author: Caroline (---.win.org)
Date:   01-22-03 11:05

Hi Trevor and All,

I experienced great difficulty obtaining Benicar at the prescribed dosage of 40mg every 8 hours. After three days of haggling I received the script today!!! It required a phone call from my doctor explaining the need. Thank you Trevor for providing the ARB Nuts and Bolts documentation.

Sincere thanks,
Caroline
 
 Re: ** ARB therapy-nuts and bolts
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-22-03 17:00

Caroline,
Wait until you get a day or two of the 8 hourly dose into you before worrying about legcramps. As for cravings - the NEW Caroline might be able to eat some of that nice sweety salty stuff again
Once your kidneys take back control of the D metabolism...

..Trevor..
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Lana (---.dialsprint.net)
Date:   02-07-03 13:11

Trevor - I wrote a really long post and then hit a wrong key and I don't know where it went. Anyway, here we go again.
I went to Doc today and she gave me everything I asked for (I must have presented my case better) and said she did not blame me for trying this approach. I walked out with Clarithromycin as well as Benicar. She also D tested me (along with cholesterol and sugar.) Theyre being sent to Lab Corp and she said she would call me with the results. Presently, I am on 6 mg pred as well as 100 mg doxy every other day. So ok - what do I do now? I don't want to start both of these new meds at the same time as I won't know what is doing what. Oh yeah, one more thing - my BP was l05/72 which is a little higher than normal - I do already have a cuff. I am also on 30 mg of Celexa a day. Thanks for the help . . . .Lana
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-07-03 15:05

Lana,
As you taper the Prednisone it will make the Doxycycline more effective.

Starting the Benicar is what I would suggest first. This will give you a baseline from from where you can wean the prednsione. As you do this, over a few weeks, the Doxy will come up to its maximum effectiveness. You may get more Herx, but the Benicar will suppress that.

Leave the Clarithromycin until after all this...

Meg had a lower BP than that when she started Benicar. I will ask her to share her experience.

Make sure you check out (with Doc) any therapy you decide upon.

..Trevor...
ps: as soon as you get to a point where you no longer need the Celexa, you should stop using it, but, again, check with Doc first...
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Lana (---.dialsprint.net)
Date:   02-07-03 17:28

Belinda, Did you start the Benicar at 40 every 8 hours or ease into it? I guess I could go ahead and take 40 mg right now (it's 8:30 p.m. now) but I need to be sure that I need to start out at that level if I already have low/normal BP. I'm definitely not interested in having any weird dreams unless it's of me 25 years ago, about 150 lbs lighter, walking on the beach ....NOT Just kidding.
Trevor, I also take 1 mg of Xanax every night so I can relax enough to sleep (make the voices in my head stop) - is that going to interact with the Benicar? I should have asked the pharmacist when I picked up my prescription but I didn't think about it.
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   02-07-03 19:08

Lana,

If you read the package insert on Benicar, you will see that there is no increased effect on blood pressure at doseage beyond 40 mg per day. Knowing that, I still "eased into it" because my blood pressure tends to be lower than many people. I took the second 40 mg dose 12 hours after the first. Noting no side effects, I moved to every 8 hour dosing of 40 mg after the first 24 hours.

Here is the package label for Benicar. Scroll down to page 10 of this PDF document to "Doseage Administration" and you will see that doses above 40 mg once daily do not have an increased pressor effect. The blood pressure effect I had in response to Benicar was not anything I noticed. What I did notice was the Benicar rid me of my Raynaud's pain in my hands, which made me very happy.

Benicar also stopped the stuffy head I used to awake with every morning and the remaining chest pain I had. If I forget and go past 8 hours on my dosing, the stuffiness and chest pain return. I can even get a headache if I go beyond 8 hours without Benicar.

I think you will be pleasantly surprised at how Benicar helps you. Let us know.

Best wishes,
Belinda
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Lana (---.dialsprint.net)
Date:   02-07-03 19:51

Belinda - Thanks for replying - I'm sitting here with my nighties on ready for bed and definitely dreary eyed. But I didn't want to take the Benicar until I heard from you - I'm such a wus. And I shouldn't be because I have gotten so much better. Doc remarked this morning how great I looked and sounded. I had not seen her since early November. Thanks again . . Lana
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   02-07-03 19:55

Lana,

I have had lower than normal B/P for about a year now, since I lost a lot of weight. It was always quite low when I was young so I was proud of getting it back. It wasn't unusual for me to have a reading of 90/70 at the doctors office. When I started Benicar I checked my B/P at 4pm at the end of a hectic day in the middle of a D-surge related to sunlight. It was 106/55 and I took my first Benicar right after that.

During that first week of Benicar which I took at 40mg every 8 hrs, most readings were in the 90/60 area but I had readings around 87/52 beginning a couple hrs after a dose and lasting a couple hrs. Sometimes I felt lightheaded briefly when I rose from sitting. This was not the same feeling of wooziness that I feel with a D-surge. It was brief enough to ignore and by the second week I did not notice the lightheadedness even though I got an occasional reading below 90/60. My heart rate was normal even when the B/P was low. Despite taking Benicar at 11pm I could tolerate a quick position change when I got up in the middle of the night. I started Minocin at 100mg every other day the second week.

The brief episodes of orthostatic hypotension (low B/P when you change position) dissipated during the second week of Benicar as my body adjusted to the new low. My fatigue resolved even with low the B/P.

At the end of week 5, I had a prolonged episode of dizziness and found my B/P to be only 79/50. It was 2 hrs after my early am Benicar and I had neglected to drink a couple glasses of water as I usually do first thing in the morning or eat breakfast. I concluded I was hypovolemic and dehydrated. After drinking and eating my B/P came back up. Lesson learned. Trevor thought my 25D-level might have fallen causing the unusually low B/P but I don't think its that low yet since I started at a 25-D of 25 and probably have a lot stored in my body fat due to supplementation.

I've not checked my B/P regularly in the past 2 weeks because I've been asymptomatic so I'm confidant that it's high enough. When I began writing this post I checked it and found it to be only 83/53 which surprised me because I can't remember the last time I felt lightheaded and I have plenty of energy. I can only surmise that my body has adjusted to this low level with no ill effects.

I do remember having a few weird dreams in those first 2 weeks (I don't usually remember my dreams) but they weren't nightmares so I was glad I was taking the full dose of Benicar.

Although the Bencar lowered my already low blood pressure, my symptoms were transient and not life-threatening. I feel confident that continuing it is the right thing to do. I hope this information encourages you to take the Benicar at the recommended dose of 40mg every 8 hours so you will get all its benefits.

Meg
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Lana (---.dialsprint.net)
Date:   02-08-03 08:18

Trevor, Meg and Belinda - I took my Benicar last night and woke up feeling fine. BP is/was 97/62 so that's ok. I took my morning Benicar at 10 a.m. (I slept late) along with breakfast and 6 mg Pred. At 10:40 a.m. I had a dizzy, pins and needles rush and then at 10:47 a.m. I had a wave that lasted for 2 or 3 minutes of the most intense heat I have ever felt and it covered every sqare inch of my body inside and out. I'm talking HOT! I have never felt anything like that in my life. What was that about? At 10:55a.m., another pins and needles surge and then again at 10:59 a.m.. Blood pressure is still ok but I need some explanation of what is happening. Thanks . . Lana
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-08-03 08:24

Lana,
I did mention yesterday that I thought the Minocin would kick back in with more herx as your body gained back control from the prednisone. That is my best guess as to what is happening.

Could also just be the 1,25-D adjusting down to a lower value. I recall you are taking quite a bit of pred, and it might be harder for your PTH and other hormones to readjust so easily. Not sure.

Please keep us up to date, and you have my phone number to call if anything really unusual pops up...

..Trevor..
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   02-08-03 09:46

Lana,

I know that when I began taking the Benicar, my vitamin D levels were already low and I had already been taking Minocin for a few months. Nevertheless, Benicar helped more blood reach my hands and face that had been intensely aching and feeling very cold every day. Once there was better circulation to my face and hands, my pain was gone.

So my explanation would be that Benicar affects any inflammation and restriction in our blood vessels, resulting in improved circulation. It will be interesting to see how you improve as a result.

Best wishes,
Belinda
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Kathleen (65.121.96.---)
Date:   02-09-03 16:34

Trevor -

Here's an update - I am feeling much better with the Benicar - 40mg, three times/day. I am taking Minocin 100 mg every other day. I recently had my prescription refilled with the non-generic. Herxheimer effects seem to be less, although I still get some tachycardia, aches and fatigues. My shortness of breath is much better, though. I have had immense trouble sleeping at night; I can sure sleep in the day though! I have started (I hope this isn't a problem, but I'm so backwards physically, anyway!) I take the Minocin in the very early morning (0100 or 0200), drink lots, and then go to sleep; it seems to help me sleep, and I sleep through the primary nasty effects.

If you are just staring Minocin, I would do everything I could to convince my doc to give me Benicar FIRST, as Trevor recommends, and then the Minocin after you are used to the Benicar. I learned the hard way!

I am noticing significant progress; and so are my family and co-workers.
I am almost back up to fulltime - and can concentrate much better, and do accurate work.

Friday I had to go out during the day; and even though I covered up as much as possible, I still felt a surge in symptoms - I felt terrible yesterday, but it is easing up today, as the vitamin D goes back down.

Take Care!

Kathy in Wyoming
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-09-03 17:09

Kathy,
Our paper actually says that an effective blockade is 40mg Benicar every 8 hours or every 6 hours. If you are under extreme challenge, as you were after the sun exposure, you will probably find you get even more relief taking 40mg at 4 hour intervals during the 12 hours immediately following the sun exposure.

Now, I know that since you have just had to fight Doc tooth and nail to get 3 Benicar a day, you probably don't want to know that you might get an additional improvement from taking even more of them

So, let's pretend I never told you

Keep smiling (and stop worrying)
..Trevor..
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Kathleen (65.121.96.---)
Date:   02-09-03 18:34

Trevor -

I won't mention it, as long as you won't mention that I actually did take an extra Benicar...and it did help! (I forgot to mention it before.)

I think as long as I feel better, my doc won't mind - he told me to increase my Toprol as needed, and I've done that - I'm trying to learn to regulate my symptoms with the Toprol and Benicar - and it's good to know about 40 mg every 4 hours in the first 12 hours - makes me feel better about upping the dose, although you have mentioned before that it would help!!

I ran into my doc in the hospital the other day - he is VERY happy I am feeling better - I don't have an appt till Tuesday, but I think he is encouraged!

Thanks for the "don't worry" - I usually try not to, but sometimes....

Take Care! Kathy
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Jan Lewis (---.lgeenergy.com)
Date:   02-13-03 11:10

Hey Trevor. Started Benicar yesterday 40mg. every 8 hours. I feel horrid today (took 200 mg. of Minocin this AM). Am extremely dizzy and feel somewhat nauseous. Sneezed awhile ago and everything started swimming. My hubby is out trying to find a blood pressure cuff. Hope these feelings go away pretty soon. I'm not sure if it's herx or blood pressure at this moment. Yuk

Jan Lewis
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-13-03 13:57

Jan,
Please stop taking the Minocin until after the Benicar stabilizes. The ARB is making profound changes to your inflammatory state, dropping the 1,25-D, and this will give you all sorts of feeling over the next few days. 1,25-D affects us badly when it goes down, as well as when it goes up.

Benicar will also make the Minocin work more effectively, and the herx from this will add to your stability woes.

..Trevor..
ps: Yes, please get the BP cuff. Every Sarc patient should have one to track the day to day variations in their disease state. The ones with the manual pump and the computer readout (for about $30) are the best value.
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Jan Lewis (---.lgeenergy.com)
Date:   02-14-03 05:36

I didn't take the Benicar today. I became more and more ill as the evening progressed. I was so dizzy nearly blacked out three different times and it was frightening at the very best. I do have low to normal BP. I got the BP cuff, but since I'm not familliar with these things, couldn't get it to work right and I was so ill, did not have the strength or energy to mess with it. I didn't take but 2 benicar yesterday because I was really frightened by the reactions. Our family has a really low tolerance of prescription drugs. I cannot stress those words enough. Each one of us usually has the worst reactions to any drug we've taken. If it is a 5% category of people who will have reactions, we will be that 5%. I may try the Benicar again over the weekend when I can be home and have someone with me. My husband was working last night and the fear of passing out with no one home was stressful at best. I do faint very easily. To top it all off, this gall bladder thing (which I really think is where the pain is coming from) is adding to the discomfort.

I'll let you know what happens. Blessings to you.

Jan Lewis
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-14-03 06:22

Jan,
All sarc patients react unusually to prescription drugs. I myself have a litany of stories to tell about this.

ARBs are different from most, though, as they are designer drugs which do just one thing - target the receptors for Angiotensin II.

But they have a profound affect on your 1,25-D level (that is why you need to take them). One SarcInfo'er reported yesterday that two weeks after she started Benicar, her 1,25-D had dropped from 75 to 35. That sort of change is going to cause profound effects until all the hormones balance up again.

In your case you have a very high ACE and a very high D-Ratio, both indicative of significant inflammation to manufacture the 1,25-D. I would expect that you, too, will have a significant improvement within two weeks of commencing Benicar. But you are going to need help to get to the other side... hopefully your husband will be able to assist you.

..Trevor..
 
 Re: ** ARB therapy-nuts and bolts
Author: David (---.proxy.aol.com)
Date:   02-15-03 22:27

Trevor,

when Sylvia wrote to you about my different BP meds(12-17-02), she left out hctz @12.5mgs per day.

In reading your response to Ms. Sam(12-14-02) you mentioned that her use of HCTZ could be problematic. Would that be the same advice for me?

I am taking Benicar (40mg) 3 and sometimes 4 per day.

With the minocin, I seemed to end up laid out for at least 1 1/2 days sometimes 2+.

This is one rough ride for a guy about to turn sixty!!
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-16-03 02:59

David,
Yes, it is rough. The antibiotics just are not doing their job unless it is rough. But you don't have to keep it up continuously, David.. these bugs grow very slowly, and you can kill them slowly too.

I can't remember exactly what sarc symptoms are giving you the most problem, but now that you have been on the Minocin for a month or two you can have another set of tests done and check the progress of the therapy. Maybe you only need to progress at half your current rate, and can have Minocin once or twice a week - the choice is up to you. The bugs wil get fewer, but at a lesser pace. And you will have more days without Herx. It is really up to you and Sylvia to figure out the best strategy.

Some times I have to take Benicar every 4 hours to get through a herx surge. Its job is to overcome the production of the extra 1,25-D. It does that well. But (of course) I only recommend taking the extra when you start to feel the early surge symptoms (in my case, a forehead flush) and know you are going to need it. There is no safety data on the use of Benicar for periods longer than 9 weeks at these high doses. It is a balance against the known harm the angiotensin II and 1,25-D will do to you. Talk it over with Doc. The extra dosage does help suppress the herx.

The only reason I am a little critical of HCTZ is that it acts primariliy via the kidneys, which are the organ most affected by Sarc and Herx. Use it if you need it to control BP, but once you get control of the 1,25-D surging your BP should stay more stable and you may not need the HCTZ. That is why it is worth measuring the BP morning and evening to track your progress. Once you get into the 120/70 target area Doc will probably reconsider the use of the double antihypertensive.

..Trevor..
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Paul (---.jeack.com.au)
Date:   02-20-03 13:10

Hi Trevor,

Just a query on dosage for ARB's.

I realize that one reason we need clinical trials of ARB's is to establish optimum dosage requirements for treating sarcoidosis, but in your opinion, does a persons weight have any relevance to the dosage requirement?

Regards,
Paul

P.S.
I'm about to start Avapro but have decided to wait until Friday night. If I have any strange reactions, I will at least have the weekend for my body to adjust before going back to work on Monday.
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-20-03 15:36

Paul,
Actually, there is no need for a clinical trial to establish optimal dosage. We have suggested trials to identify/compare ARBs:- why Avapro is not as good as Diovan and Benicar, etc.

There is little point in waiting several years to affirm something that is really obvious - namely that ARBs are actually effective in treating Sarcoidosis. In fact, if a trial was to get underway, I would seek to have it terminated early, based on the overwhelming interest of the placebo patients (why should the placebo patients be allowed to suffer for a year of the trial when the data is overwhelming that it would help them?). But that is technical medical stuff. I just wanted to set the record straight.

The key thing about dosage is to remember that the ARB is intended to blockade, or block-up, all the Angiotensin II receptors in a person's inflammation. That is a function related to the person's inflammatory state, not to their weight, race, age or sex. It will need to be individualized, which is what we are talking about when we talk about increasing the dosing when a Herx flare comes on, and etc.

There will be a need to educate Docs in exactly how these ARBs work, however, so that they don't see them as pills that cause increasing lowering of blood pressure with increasing dosage. That misconception has caused several patients much suffering, as it is important to start with the full blockade dosage to minimize problems. A partial blockade can be worse than no blockade at all.

The only thing I see wrong with waiting for the weekend is that Doc may not be in his office if you need him. Make sure you have someone with you for the first 48 hours, and measure your blood pressure twice a day. Just in case there is something else wrong besides the sarc...

..Trevor..
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Eileen (---.client.attbi.com)
Date:   02-27-03 10:02

Hi again,
Question. WHy are some people here told to take Benicar 40 mg every 12 hrs, where others (like me) are told 40 mg every 8 hrs?
My doc is prescribing the Benicar for me, but had questioned the amount of 40 every 8 hours. I am sending him the info on the ARBs, but need to know about the amount and why the differences with me and others.
Thanks much
Eileen
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   02-27-03 12:09

Hi Eileen,

I think that what you read is information about patients who could not get their doctors to initially prescribe the ideal dose of Benicar which is 40mg every 8 hrs. Some doctors are concerned about the increased dosasge particularly if their patient is not hypertensive. When the doctor sees that the patient does okay with the every 12 hr dose, he is more likely to order what is needed for an effective inflammatory blockade-40mg every 8 hrs. It's a compromise, one I hope you won't need to make.

Meg
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Eileen (---.client.attbi.com)
Date:   02-27-03 12:28

Hey Meg,
Nope, he prescribed the 40 mg every 8 hrs for me. I had emailed him your info here. I love this guy
I am going to be leaving shortly to go and pick the prescription up. Do I take this at the same time as my Minocin in the morning on an empty stomach? (then of course every 8 hrs after) Or does it really matter if I have eaten or not? I am also going to pick up a BP cuff, Anything I should know about that as well? Meaning, how low is too low, and if it does go too low, etc., what do I do?
Any dos or don'ts when taking the Benicar?
Thanks for your help Meg
Eileen
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   02-27-03 12:56

Eileen,

It's always nice to hear about supportive doctors. That gives hope to those who are having difficulty getting the tests and meds.

You may take the Benicar with or without food. You may take it with the Minocin for your first dose. You will want to figure out an every 8 hr schedule that works well for you (doesn't get you out of a sound sleep, etc) There are a variety of blood pressure cuffs available at discount stores. The less expensive require you to squeeze a bulb to inflate the cuff but their accuracy compares with the more expensive automatic variety where you just wrap the cuff around your arm and push a button.

Check your blood pressure before you take the first dose of Benicar so you will have a baseline, then check it frequently, maybe every hour, after that first dose. Record it in your journal. Then for the first few days, check it a couple hrs before and after a dose just to see what's happening or anytime you don't feel well. After you are confident its okay, you can just check it once in awhile to keep doc happy.

IMO, a blood pressure is too low only if it prevents you from performing your normal activities. A few of us have extremely low blood pressure and have been able to continue taking Benicar despite occasional transitory positional hypotension. I would not expect you to have any trouble with a usual blood pressure of 130/80. If you feel any symptoms of lightheadedness, dizziness or fainting sit down, take some deep breaths and check your blood pressure. It's just as likely to be a symptom of your changing 1,25-D level. Most people do not feel any of these symptoms unless their pressure is below 90/70 and Benicar does not have a very strong blood pressure lowering effect.

Good luck and let us know how you get along.

Meg
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Eileen (---.client.attbi.com)
Date:   02-28-03 10:07

Hi all,
Wow, in about an hour I am due for my 3rd dose of the Benicar and my BP is now down to 105/69 Last night before my 1st dose it was 136/89.
Feeling a bit woozy and definitely can't stand up quickly. Is it safe/ok to take my next dose in an hour? Thanks
Eileen
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   02-28-03 11:03

Eileen,

According to the Benicar label, you should already have the full pressor effects of the Benicar. So taking another Benicar within an hour shouldn't change your blood pressure, if that is what you are worried about.

A blood pressure of 105/69 has never, ever been anything my doctors have been concerned about. Many of us have lower blood pressure than that, with no ill effects.

However, if you stretch your Benicar dosing beyond eight hours, you could experience the effects of increasing 1,25-D levels. If I go beyond eight hours withour Benicar, I get a stuffy head, headache (sometimes), heaviness in my chest, temperature drop in one hand and tingling and numbness in my arm and hand. Trevor described other effects in his paper.

Belinda
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Eileen (---.client.attbi.com)
Date:   02-28-03 11:18

Belinda,
Thanks, my concern was that my BP would go even lower. Just wanted to check to make sure that my drop is normal. Interesting effects that I am having is a warming sensation in my hands and feet. Feels like I have all kinds of blood going to them. Now I am wondering if I was having more of a circulatory problem that I realized?
Have taken my pill.
Thanks, Eileen
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Betty Campbell (---.29.221.203.acc11-dryb-mel.comindico.com)
Date:   02-28-03 12:34

Paul,

I note the date on your post re Avapro. I have been away for 10 days, still keeping up my 8 hourly Avapro!. (I live near Melb. Aus.) My local doc started me on 75mg Avapro, but soon realized the benefit of the 150mg which I took only 12 hrly. For some time I have been taking it 8 hrly and feel benefitted.

On my recent visit to my understanding LMO, he suggested, as the ARB an ongoing thing, that I have a script for the 300 mg tabs and cut them in half. This saves trips to the chemist and perhaps more economical. Last night I set about cutting up one card of 15 tabs, which seem huge and have a 4 figure number on one side and a heart on the other side. Easy to cut when standing on their side. I have put them in an airtight clear plastic phial container such as chemists use. About an hour ago I tested out the efficacy of dissolving, using the mug/glass of hot water I use to wash it down. It dissolved immediately.

My first try with the Minomycin was with tablets of 50mg, using 100mg for first try, then 50mg for 2nd tryout. Both times the herx flare was about equal. With the Klacid (Clarithromycin), I just felt well below par in the energy stakes, but no pains . Yesterday I had my first Minomycin CAPSULE, and had a fairly bright day all round, but too soon to know as yet as with me, the Herxheimer things does seem to take it's time showing up.

Betty
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   03-01-03 10:51

Because Benicar to treat sarcoidosis is needed at a higher dosage than it's usually prescribed for hypertension, even if the doctor writes the prescription for the correct dosage it may be misinterpreted by the pharmacist, the mail-order pharmacy or the insurance company. Therefore, it's a good idea to verbally clarify the correct dosage (40mg every eight hours) with the pharmacist or highlight it in writing.

Sometimes an insurance company will balk at covering the increased medication. You may have to accept the standard amount of pills (you can take them as prescribed) until the insurance company approves the increased dosage. This usually takes a couple weeks. Call your insurance company and explain the situation to find out their coverage and the procedure to follow if you need to apply for an exception. Get a fax or phone number for your doctors convenience.

Your doctor may be required to write a 'letter of medical necessity'. Below is a form letter that your doctor may find convenient to follow. It contains the information that has helped some of us get our full medication insurance benefit.


To Whom It May Concern:
"..... is my patient and is currently under my care for sarcoidosis. I have prescribed Benicar, an Angiotensin II Receptor Blocker, at 40mg every eight hours.

Studies have shown that Sarcoidosis patients have additional Angiotensin II receptors in their inflammatory granuloma, and therefore the dosage has to be individualized (in full accordance with the labelling) in order for the drug to be fully effective.

FDA guidelines allow this dosing and this medication does not work properly at a lower dosage, due to the sarcoid inflammation.

Thank you for your consideration in this matter."
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Kathleen (65.121.96.---)
Date:   03-01-03 17:16

Eileen -

Just an FYI - I am on 40 mg Benicar every 8 hours; I am also taking Metroprolol twice per day (which is also a hypertensive med) - I just drink A LOT, and can pretty much keep my blood pressure stable. My doc is a little nervous, but it is actually a great relief to me to be back down where I belong (until I got sick, all my vitals were very low).

Whenever I feel dizzy, or woozy, I try to drink some extra just in case. I have a home BP machine, but it errors most of time, since my pulse is irregular - although I agree w/Belinda and Meg - low is not necessarily bad; and after being high for the last few years - it really feels better!!

Keep those fluids going, and monitoring your blood pressure, and you'll get to where you are more comfortable with the effects of Benicar (truly a wonder drug!!!)

Best of luck,

Kathy in Wyoming
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Diana (---.cache.pol.co.uk)
Date:   03-08-03 12:44

Next week, I see the cardiologist who has been investigating why my heart is sometimes erratic. He also monitored my blood pressure for 24hrs, and I plan to ask whether he thinks I could cope with Benicar/Diovan or whatever. As a paraplegic, my blood pressure has historically been low - averaging 95/65 and quite commonly 85/55, with the occasional spike of 110/70 say. He will presumably be able to give me values while I was asleep. Have you heard of anyone using Benicar under such circumstances?

I will not be taking any drugs at least until I've got my D/ACE blood results back (taken last week), but I want to have my arguments prepared so I don't have to keep waiting for one specialist to get results from another before I can start any treatment. If I cannot have ARBs for blood pressure reasons, is Minocin therapy alright without?

Diana

PS Somebody, somewhere has decided I am safe to drive my van. It is wonderful to be independent once more.
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Debra Simmons (---.freeuk.com)
Date:   03-09-03 12:52

Hello Trevor and all, I had really weird reactions when I increased my Diovan from bd to tds. Light headedness, orthostatic hypotension. My bp went from 140/90, 199/100+ at the hospital, down to 130/70 within 3 hrs of my first diovan. It stabilized at 105/65 for four days roughly, then I increased to tds, my bp 85/55 and I felt dreadful. I stopped the diovan for two days completely and have now gone back to 80 mg bd. My dreams have been almost hallucinations, really weird. I remember what you said Trevor (even up your dosage, and take even 40mg bd or 20 mg bd) however I am taking the capsules, so today I have cut them in half, quite equally and tried that. If tomorrow, I feel ok, then I will increase my dosage to 40mg tds.

One thing, has anyone else had a euphoric feeling, about 30 mins after taking diovan, almost like a speedy rush? Is it because I am cutting the capsule and therefore it is being absorbed more quickly?

One more thing, my irritability bacame almost unbearable when I stopped the diovan. Almost irrational!!! Impatience, I can't tell you how bad it was, I went off for the weekend on my own. It is better now, slightly, but I'm edgy and grumpy. It is ok at work, I have my prof. hat on, but once that comes off, wow. I have had to apologise to two friends, who thankfully know me well. I am not usually like this.

Next point, I too react strangely to different prescribed drugs, and am on Zopiclone 7.5mg nocte to help me sleep, for most nights I cut these as well, as I am hung over with the full amount. I get strange reactions to most things, now it is chinese food, and even some indian food. Why? I have eaten this for donkeys years! I have to keep antihistamine on me at all times.

I feel like a hypochondriac, and I have never been like this.

Help.

Thanks Deb
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   03-09-03 14:02

Hi Diana,

Several of us have taken Benicar despite already low blood pressure. One who has a normal pressure of 80/50 has been on Benicar for a few weeks now and has not noticed any adverse effects. But if you can't convince your doctor to let you try it, you can take the Minocin without Benicar. If your 1,25-D isn't too high you shouldn't have much trouble with Herxheimer reaction. But sometimes the antibiotic doesn't penetrate the inflamed tissues well and Benicar is needed to reduce the inflammation in order for the treatment to be effective.

Congratulations on regaining your independence and best wishes for a good visit with your doctor.

Meg

PS I think there is more discussion about this in previous posts on this thread or in the general questions.
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Debra Simmons (---.nhs.uk)
Date:   03-10-03 04:02

Trevor or Meg, I know you are all really busy, but could you manage to answer my thread.// Today I have taken 40mg diovan and will do this bd today, and check my bp again. Tomorrow (11th) I will take 40 mg tds and try again. Is this ok?// Thanks deb.
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   03-10-03 05:38

Hi Debra,

I suspect the symptoms you experienced were due to your sensitivity to medications and the fast reduction in your B/P. This is unusual but you did the right thing by cutting back. Your irritability may have been due to an increase in your 1,25-D as result. I've not heard of the euphoria after taking Diovan but it seems possible in view of its profound affect on 1,25-D.

I'm glad you're giving it another try and think that the sooner you get up to 40mg every eight hours the better. Just keep an eye on your B/P and remember that your body will get used to the lower pressure.

Good Luck!

Meg
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Margo (---.adsl.duke.edu)
Date:   04-15-03 06:43

Reidar,
We admire your film. I hope you find that this site helps you.
Here are foods to stay away from: egg yolks and most fish contain high amounts of vitamin D. Sometimes food is also supplemented with vitamin D. I don't know what happens in your country. In the US, milk and butter almost always contain additional vitamin D. Breakfast cereals (cornflakes, etc.) are also often supplemented with vitamin D in the US.
Food supplements and vitamin or health food products may contain vitamin D. It is necessary to check the labels, and sometimes, to call the manufacturer. In the US, only additional vitamin D is on the label. If the food naturally contains vitamin D (such as fish oil), there is no requirement to list it on the label.
Staying out of the sun, and using high-quality sunglasses also helps, by decreasing your body's natural production of vitamin D. (There are threads that discuss this, as well as links at the top of the page.)
My daughter, who is eleven, found great relief from avoiding dietary vitamin D. (Within about two weeks, we noticed some improvement.) She felt even better when we were able to start ARBs with her. One of her primary symptoms was fatigue. She was so extremely tired and low energy - really unusual in a child. Her energy picked up once her vitamin D exposure was lowered.
It is helpful to get your vitamin D levels measured. (See the link at the top of the page.) Many of the symptoms of sarcoidosis are from high levels of 1,25 dihydroxy vitamin D. The ARBs lower those levels. Antibiotics in low doses (minocycline, for example), will kill the bacteria that drives the sarcoid inflammation.
Good luck to you.

Margo
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Terri (---.rescare.com)
Date:   04-21-03 14:27

Hi!
I was diagnosed with Sarc almost one year ago. I had to have my spleen removed due to it being six times its normal size. They did biopsies of my liver and lungs. It confirmed Sarc. My ACE at that time and several months later was only 12-28 so no drugs were started. I started having symptoms of pain throughout my mid-section around Oct. 2002. After CT scans and much blood work, it was determined that Sarc was active with an ACE of 250! After much "run around" from my PCP I finally have an appointment with a SARC specialist on Apr. 28.

I had my PCP do labs specifically from your site, another ACE and Vit d 1,25. I forgot the Vit d 25. How much of a difference does this make in determining treatment? I don't know if the specialist is pro-steriod, but I am not! I hope he is willing and open to ARB therapy. I am going there armed with all the info I have gathered from your site and others you recommended.

Thanks for such an informative site for all of us out there seeking answers.
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Rick MacKinzie (---.SNVACAID.covad.net)
Date:   04-21-03 15:30

Trevor,

I am still having difficulty getting the insurance company to go with the Benciar at this point however the Dr. is continuing his quest to get it approved . . .

Is there a difference if you take Diovan or Benicar?

What is the difference between the two? And,

Is there a specific paper that can be given to the insurance company in favor of Benicar over other drugs?

Thanks,

Rick
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   04-21-03 16:16

Rick,
In this paper the authors conclude that olmesartan, at its starting dose, is more effective than the starting doses of the other ARBs tested in reducing cuff DBP in patients with essential hypertension

This is a terrible paper with no scientific merit, but it will probably convince an insurance company clerk

..Trevor..
ps: settle for the Diovan if you have to - I used it fine for 2 years. It doesn't cover the sinuses but is otherwise pretty good blockade. You need 3-4 80mg capsules a day, depending on disease severity. Oh- the Diovan capsules were far more effective than the Diovan tablets - but I am not sure they make them any more...
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   04-21-03 16:24

Rick,

You might take a look at this paper and see whether it might help.

Comparative cost effectiveness of angiotensin II receptor blockers in a US managed care setting: olmesartan medoxomil compared with losartan, valsartan, and irbesartan.

Belinda
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   04-21-03 18:58

Hi Terri,

Welcome to SarcInfo. I'm glad you found the information helpful and have taken steps to inititate treatment. Your serum ACE was certainly elevated last October. I'm surprised it's taken you so long to see an 'expert'. But that may be a good thing because many specialists still advocate steroids and chemotherapy. You should be prepared for that.

The ratio of 25-D to 1,25-D can be an important indicator of inflammation and a justification to begin Angiotensin Receptor Blocker and antibiotic therapy. The 1,25-D alone will give the doctor a lot of information also but he may need Trevor's help interpretting the results.

This protocol can and has been followed without establishing the D-metabolite levels. Their real value is in following the effectiveness of the medications. But your symptoms will also give you a good indication if its working.

It sounds like your PCP might be receptive to helping you with this treatment. Once they understand how simple and safe these meds are, many PCPs will assume responsibility if they are assured they won't be contradicting any specialist you may have chosen.

Please let us know how your appointment goes.

Meg
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Kathleen Stuart (65.121.96.---)
Date:   04-24-03 18:08

Kevan -

I had reactions to both the Minocin and the Benicar, both separately, and then together!!!

I started w/Minocin, which gave me severe herxheimer reactions; then I added Benicar, which gave me a whole other set of reactions. Per Trevor's advice, I stopped the Minocin until I could easily tolerate the Benicar. Then I added the Minocin again.

I find I still have trouble with Herxheimer, and that there are times I need to go to every third day in the Minocin dosing. I have had a couple of bad weeks - but as it turns out, I can correlate it with the weather getting better and sunnier - I will clearly need to cover up better than I have been!

But in the meantime, once I was adjusted to the Benicar it became my favorite med of all time!!! It really helps the inflammation, and eases any herxheimer.

Best of luck, and take care,

Kathleen from Wyoming
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Eric from Memphis (---.proxy.aol.com)
Date:   05-06-03 00:18

Greetings from the Land o' Elvis,
I am a 45 year old male sarcoid male who was diagnosed in November of last year after a year of mis diagnoses. I have a very supportive MD who keeps up with this website. My current status is 40 mg Benicar 3 to 4 times a day depending on my Herx. I am taking 1 100mg Doxycycline every other day on Monday and Wednesday. I can't take them on Friday because I work Friday night, Saturday night and Sunday night. I am hoping that this gives my body a chance to recover. At least I hope It is not doing any harm.
Today marks the third doxycycline that I have taken. I have been getting a strong Herx so far.I just keep warm, drink warm tea, and stay out of the sun. I still feel very weak but compared to last year feel so much more hopeful. I do have a question. At what point should I consider switching to Minocin? I have an appointment with my Doctor today and as I have stated before, she actually listens.
Thank You,
Eric
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-06-03 04:15

Eric,
Minocycline penetrates the tissues better than doxycycline. Read the newly updated "Minocin Dosage Issues" tutorial, there is a link in that to a paper by Dr. Cunha describing the differences. You should print that paper for Doc.

It's not a real problem while you are getting herx, because you probably don't want to kill any more bugs (and create more herx) anyway. But it would not hurt to ask Doc for a presciption in hand so that you could at least compare the two antibiotics.

..Trevor..
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Kevan Woodcock (---.pacificinsight.com)
Date:   05-06-03 13:08

Hi
I have been on Diovan for approx. 3 weeks now. (and minocin for 10wks approx.) The first week was at 80mg once/day. My BP stayed constant at sys 115/ dia 65. I then went to 80mg 3xday and my PB dropped to average 100/58. Now its dropping to nearer 86/55. I have felt very fatigued and sarc symptomy. My doc says it is very likely fatigue from lower BP but i also have my sarc symptoms back. I have felt worse ever since i started the diovan but it is getting worse and my BP is dropping. I will reduce the diovan dose to recover my BP. I am left wondering if my symptoms are of Herx? or of too low BP? or of both? .
Also i cant help but wonder if i am better off not taking the Diovan? as i felt great when i was on minocin only.
Any thoughts?

Kind regards and thanks.


PS I have a great Doc supporting me with this.

kev
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-06-03 13:28

Kevan,
Your D Data was:
D25 = 67nmol/L normal is 25 to 100 = 26.8ng/ml
D1,25 = 80nmol/L normal is 40 to 120 = 30.8 pg/ml
ratio = 1.19
ACE 80.

The D metabolites were very close to normal. It is possible that the Diovan is having too much of an effect on you, but I doubt that. Your kidneys ought to be able to adjust.

When you reduce the diovan dose, try to keep the interval at 8 hours, and throw away half the capsule contents, or something similar. Intermittent dosing is generally not as good as frequent small doses.

I assume you are not taking the Minocin right now? Starting on ARBs while on Minocin doesn't seem to work very well, as the ARB seems to enhance the tissue penetration of the antibiotic.

If you were getting herx before starting diovan and if it was bearable, then you could talk with Doc about stopping the ARB. Looking at your D data, and assuming it is reliable, it is possible you may not need the ARB.

I welcome your thoughts on my comments...

..Trevor..
 
 Re: *** ARB therapy - nuts and bolts ***
Author: John T. (---.proxy.aol.com)
Date:   05-10-03 06:45

Just a couple of questions. My tests came back. ACE 55, D 1-25 47, and D 25 16. I could only get my Dr. to write for 40mg/2X a day to start. My first question is, should I take it as written (every 12 hrs.) or would I get better results trying to split the pills and taking it in 3 doses every 8 hrs? I,m getting my D rechecked on 6/17 and I would like to get the most from the Benicar so Dr. is impressed enough to up the dosage to what you say it should be.
Second, I have been taking Turmeric supplements as an antiinflamitory as I have found that it helps with my symptoms. How much effect, if any, would this be havig on my ACE and D levels? It's not been a cure-all but I sure notice a difference if I don't take it.
Lastly, I'm still not clear on how to intrtperate my ACE level. Where do I stand with a level of 55?
Thanks for your help and support.
John
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-10-03 06:56

John,
ACE, on its own, is not a really useful indicator. that is because the value is affected by genetics. See this thread for more info. It is also profoundly affected by steroids, even in eye drops or inhalers they enter the bloodstream and ACE seems to be the first marker to drop.

A 1,25-D of 47 pg/ml is high (as you know). Especially for a sarc patient. But your 25-D is only 16 ng/ml, indicating that you are controlling your D intake. You can get it lower, down to around 10-12 or so, and that will help a little, but the main thing you have to do is kill of the bacteria fueling your D-Ratio. of 2.9

Everybody's experience on SarcInfo has been that you HAVE to take the ARBs every 6-8 hours. Why don't you suggest to Doc that you split the Benicar tablets and take 20mg every 6 hours or so. This is a sub-optimal therapy, but should be much better than nothing, and much better than 40mg every 12 hours.

I know of nothing which would indicate that Tumeric is effective against bacteriall fueled inflammation. Since not even prednisone affects 1,25-D generation very much , I would doubt that Tumeric is having any effect on your readings.

..Trevor..
 
 Re: *** ARB therapy - nuts and bolts ***
Author: John T. (---.proxy.aol.com)
Date:   05-10-03 12:16

Thanks, I will split and go every 6hrs. I have refused steroids so that is not a factor in my readings. Are the levels I have low enough to begin the Minocin without putting myself in to bad shape from herx or should I get the D levels lower first?
John
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-10-03 17:46

John,
Hard to say. You should be OK, but it is a little marginal at that ARB dosage. Those of us with super helpful Docs sometimes get to increase our dose to 40mg every 4 hours to get through bad herx episodes. I recommend you keep the dose low and work up gradually. Remember that herx often comes by surprise, often after you have been using the antibiotics for some time. It depends on what layers of tissue expose what bugs at any particular time in the therapy. Its a little like peeling an onion.

..Trevor..
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Jan Lewis (---.lgeenergy.com)
Date:   05-14-03 12:54

Terrific news! I just got word from my insurance company that I can refill my Benicar every 10 days and get 31 tablets for the $12.00 co-pay. So, $36 a month is better than the $112 I was spending. I will also be reimbursed for the difference for the amounts I was paying for myself. Yippee!!

Jan Lewis
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Kevan Woodcock (---.pacificinsight.com)
Date:   05-14-03 13:07

Hi All
I have just stopped taking Diovan. I am not sure if this is the rite thing to do but i have been on it for One month and ever since the first tablet i have been feeling worse and worse. ie, more sarc symptoms but really bad. I have also been on Minocin for 3 months and felt great on them before diovan, i even started to run and bike again. I stopped taking the Minocin for one week to try and get used to the diovan but i just felt even worse. Now i guess the symptoms could be herx? (I did start spending more time outside) which is good but it has got too bad to handle. I really do want to stay on diovan and reap its benefits but i dont seem to be able to tolerate it. Also i am impatient to try and get back to feeling good as i did on the Minocin before Diovan started. I dont know if what i am doing is rite but i will try minocin again for a while and if i still feel bad then i will try the diovan again. Its amazing that i have lived with sarc for years and i had a 8 week window of feeling great on the minocin without diovan and i really want to get back to that feeling. Asap.

regards and thanks to all who contribute to this website.

kev
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-14-03 13:16

Kevan,
You gotta go with your instinct, and keep a sharp eye out for unexpected bends-in-the-road.

If you want to start ARBs again, I would suggest Avapro. It is a very different absorption pathway to Diovan, and may not give you the same problems. Of course, if you could only get Benicar in Canada... but that's another story...

You are correct - Stick with the Minocycline - it is what will fix you. The ARB (usually) just makes you feel the herx less and helps the minocycline a little bit. The antibiotic (and maintaining a low level of 1,25-D) is the key...

..Trevor..
 
 Re: *** ARB therapy - nuts and bolts ***
Author: John T. (---.proxy.aol.com)
Date:   05-14-03 16:12

Hi Trevor, Since starting on Benicar, I have had a lot of strange sensations, but nothing too much to handle. The one thing I have a problem with is insomnia. I don't seem to be able to fall asleep until about 4hrs after the last dose. I have been taking 20mg every 6hrs for about 1wk.
My question is; could this be just a matter of getting to the meds, or do I need to look for a different solution to get to sleep? I seem to remember reading somewhere that insomnia was a side effect for a small number of people. Any thoughts on how to deal with this would make me a happy camper. 4hrs sleep every night is wearing real thin.
John T.
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-14-03 16:21

John T,
20mg is only a partial blockade. I only suggest it when a doctor is worried about hypotension.

See if Doc will let you run at 40mg every 6-8 hours for 3 or 4 nights. It does make a difference.

I am still not entirely sure how 1,25-D fluctuations affect our sleep patterns - but they do - profoundly.

..Trevor..
 
 Re: *** ARB therapy - nuts and bolts ***
Author: wendy (---.stcgpa.adelphia.net)
Date:   05-15-03 17:43

Of those of you on ARBs, does your blood pressure increase (normalize) over time or does it continually stay at the lower level?
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   05-15-03 21:07

Wendy,

I have been on Benicar at 40mg. every eight hours for over 4 months. The decrease in my blood pressure has been stable. My blood pressure has not returned to its previous level. It is quite low but has not caused any significant problems.

Meg
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Jan Lewis (---.lgeenergy.com)
Date:   05-16-03 05:41

Wendy, my blood pressure is exactly the same as it was before Benicar. Somewhere around 110 over 68.

Jan Lewis
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   05-22-03 17:59

Everyone should take a look at the new guidelines from the National Institutes of Health. Normal blood pressure is defined as LESS THAN 120/80.

This should clarify things for those who thought they were not hypertensive. As we understand more about blood pressure, the concept of what is "normal" continues to change - and it continues to go down.

Belinda
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Reidar Jönsson (---.swipnet.se)
Date:   05-23-03 01:19

Dear all,

a small update from Sweden. I have visited my doctor, who is a very open minded person, but tells me that they can't order a blod test the way you describe ... she.s ordering an x-ray on my lungs, and then a visit to a specialist on this sarc field. Now, that will be a long wait, I guess. My sister (who was operated in her feet last week and the doctors only found lumps of infections and didn't know what to do) tells me that her doctor does not prescribe the sort of medication, described in your articles, since the are not approved to be of use in Sweden. I guess it's becouse we don't have that much sun here ... All my small bones in my feet are in a total inflamated state ... it hurts a lot. I can hardly walk. I have stopped beeing outside and exposed to sun, but on the other hand it's god for writing ...

Now, I could go to another country in Europe and visit a doctor and get a blood test ... and from there medication. Is there any one that I could go to? For example I am going to London soon.

Reidar
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-23-03 06:02

Reidar,
Sweden is not a third world country. Indeed, the amazing breakthough of finding Rickettsia living inside granuloma took place in Stockholm!

You are just experiencing a bad doctor - one who is so sure that she/he knows all about Sarcoidosis. This is the same slippery slope that we all have to face, everywhere in the world.

Take a look at the opinion of Dr Evelin Lindner, who teaches at Oslo, Trontheim and Columbia, Universities who wrote: "After 20 years of severe symptoms, I experience relief for the first time. Angiotensin Receptor Blockade has noticeably reduced my pain"

Maybe your doctor would listen to the opinion of such an eminent Scandinavian Physician. If not, it is time to go looking for one who will..

Sincerely,
Trevor
 
 Re: *** ARB therapy - nuts and bolts ***
Author: John (---.oc.oc.cox.net)
Date:   05-23-03 15:35

I started the Benicar but have adjusted the dosage to start to make sure it does not have too much of a effect on me and to be sure I can function during the day. 40 mg at night, then 20ml in the AM and another 20ml in the evening. I will up it to the regular dosage if I fell relatively ok for a few days. Day 2 so far.

The relief overnight is considerable. I sleep well. Feel a bit numb overall though even though there is much less muscle pain.

Question-It seems to have caused some bloating or retaining fluids as I feel and look puffy, reminds me of the prednisone. Yuck. Is that normal and has anyone else experienced that?

Some muscle twitches in the foot for some reason.

How long should I stay on the Benicar before I start a low dose of Mynocycline? 2 weeks?

If this is any indication of the relief that the ARBS give, I will become addicted to them for sure. lol.

TIA
 
 Re: *** ARB therapy - nuts and bolts ***
Author: wendy (---.stcgpa.adelphia.net)
Date:   05-23-03 16:10

Hi TIA -
Yes, I've also noticed bloating or water retention or something? My diet hasn't changed and I wouldn't have anticipated a weight gain in a week 1/2, but my pants are not buttoning the same and my legs feel pudgy.

Is this normal? It feels hormonal. I too felt this way on 20mg of prednisone or that sensation like just before my period.

I've been on Benicar only a week 1/2, but I have been unable to up my dosage as my blood pressure has dropped so much: 89/58 (at dr. office this week).

My hands go to sleep and when I wake they are tingling, this every night for the past four. Every time I stand up I nearly pass out with blackness. I feel a tightness in my chest that was not there before starting Benicar.

Tried yesterday to up the Benicar dose to 15mg with worsening low blood pressure side effects.

I may just be hyper sensitive to drugs (this has been the case in the past) and I am a fly weight at only 102 pounds (so anticipate a difference due to body mass).

Expect I will keep the Benicar to 10mg for now and begin back on antibiotics next week as the Benicar is making an improved difference at the lower dosage.
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-23-03 16:45

Wendy,
Stay on the 10mg Benicar for about 2 or 3 weeks without any minocycline until you stabilize. Your 1,25-D started out so high that it is going to take a while for all the hormonal systmes in your body to come back into kilter. Let that happen before you use the antibiotic.

As the herx comes on your BP should rise, and you can increase your dosage accordingly so as to juggle your BP and your herx symptoms. After a while you will get less worried about your BP, the dizzyness is all due to high and low 1,25-D

..Trevor..
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   05-23-03 21:22

John,

The Benicar has a rapid effect on your 1,25-D level. It can reduce it by as much as half in just 2 weeks. Because your brain has become accustomed to a high level, reducing it may cause unpleasant neurological and 'hormonal' symptoms at first and may account for the discomfort you are experiencing.

Some people feel immediate relief of certain symptoms when starting the Benicar, others feel awful due to the withdrawal symptoms and some experience a combination of the two effects. It sounds like you are in the combination category. How you feel after starting the Benicar is very individual depending on level of 1,25-D, dosage of Benicar, and type of sarcosidosis involvement.

I suggest you increase to the recommended dosage of 40mg every eight hours asap. It will provide you with a better inflammatory blockade and you will avoid the adverse effects of too low a dose (see tutorial). How long you should stay on the Benicar before starting the Minocin depends on how high your 1,25-D was to begin with. The reason for starting it first is to get the 1,25-D down a bit so that the inevitable D-surge from the antibiotic won't be too uncomfortable. A couple weeks is usually enough for those with moderately high 1,25-D levels.

I'm glad the Benicar is helping and don't worry, it's not addicting.

Meg
 
 Re: *** ARB therapy - nuts and bolts ***
Author: John (---.oc.oc.cox.net)
Date:   05-23-03 21:39

Wendy, TIA-means Thanks in advance.

Anyone have a suggestion for a natural diuretic for whatever is causing the bloating I am getting from the ARB's? I think some kind of tea does that if I remember correctly.

Decided to go with the full 40 ml 3 times a day since I feel so good with the ARB,s right off the bat like that. Pretty sure it is not just a placebo effect because of the immediate relief from some long standing problems.

Chronic neck pain from a 25 year old whiplash injury is quite muted. Chronic pain running down the right leg and right lower back has muted a lot also.

Chronic dyspepsia is what they called it or GERD or IBS or whatever. After colonoscopy and endoscopies (twice) in the last 2 years found nothing but some acid reflux damage to the esophagus of a minor nature. Prilosec was not working good enough and Protonix did not better. Have been taking NEXUM since last year and that stopped the heartburn and unsettle stomach. But the minute I stop taking that, it comes roaring back. Interestingly, I haven't taken one for 3 days now and I am not having heartburn at all. Never went more than a day without that happening before. Even the gastro was puzzled as to why I was having a constant upset stomach so he double the dose of NEXUM because he did not have any answer so he would just have to "treat the symptoms". I had cut back to the normal dose last year as it worked well enough. I have always suspected that this chronic dyspepsia was somehow related to the sarc. Hummmm. Doubt that it is the sole reason but interesting that the ARB's have had some effect on this seemingly unrelated malady.

Aside from the bloating, the chest pain I usually get has been more intense but nothing major. Not worried about it being heart related as I had a slew of test for that also last year and everything was fine. Some muscle pain in my left foot is a little worse also. No I haven't seen the movie. lol And a general kind of numbness which could just be the absence of pain I always have, Haven't decided that one yet. I did feel a somewhat ill in the afternoon yesterday which is why I stepped it up to the full dose this afternoon. Feel better today.

How long have most people waited to start the Minocyline after starting the ARB's? Got to time it to work around life.

Don't want to give the impression that I view this as a panacea for all the ills of the world. I have had a lot of questions answered by other post on here that enumerated several of the same symptoms I have experienced so maybe someone can relate to this also.

Cautiously optimistic

John

TIA's at the bar. jk

 
 Re: *** ARB therapy - nuts and bolts ***
Author: DJ (---.tnt3.billings.mt.da.uu.net)
Date:   05-24-03 06:39

Hiyas John,

The ARBs took a good 3 weeks to kick in fully for me, but my doc had me start off with a small dose for a couple of days ( with horrible results. ) I should have known better after reading all Trevor's research, but I am still a little intimidated by 'Doctor's orders!' I felt rotten until week three. I saw no change in BP between a "normal" dose and "our" dose of 3X day, but the reduction in symptoms was amazing. I can now make excursions into the daylight world without being bedridden the rest of the week.

The antibiotic seems to be reaching many new areas since I added ARBs to the regimen, if my symptoms are any indication. The nice thing about the Minocyline is you can tailor the dosage to fit your herx reaction, and your activity schedule.

Thankful to be getting back her life,

DJ

PS What movie?
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   05-24-03 08:44

Hi John,

I'm happy to hear that you have increased the Benicar to the recommended dosage of 40mg every eight hours and that you're feeling even more sarc symptom relief.

I would not recommend anything to take for your bloating. I think it's not a good idea to add any unnecessary medications; even teas which are natural are also medicinal. Time (a very good medicine in itself) should take care of it. If you think the bloating is related to fluid retention, limiting your intake of salty foods might help.

I started taking Minocin after one week of Benicar at the recommended dosage. My 1,25-D was 38 at the beginning of treatment and initially Benicar made me extremely tired, spacey and photophobic but nothing I couldn't tolerate. If your 1,25-D is higher or if you are still adjusting to the decrease in 1,25-D as evidenced by continuing uncomfortable symptoms, you will want to wait a bit longer.

Thanks for sharing your experience with us. I'm sure it will be helpful for others.

Meg
PS. DJ, I think John was referring to the movie My Left Foot, a title I could also use to describe my sarcoidosis story!
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Margo (---.adsl.duke.edu)
Date:   05-24-03 13:53

Reidar,
Many of us have gone to physicians or other health care providers who are a bit "non-traditional." In the US, they will all include terms like "alternative medicine" or "integrative medicine" in a description of their practices.
I think that physicians who are already investigating medical treatments that are out of the main-stream have faced the issue that the more standard medical approaches do not provide a complete answer. The recommendations here are backed up by research, but are very new.
A doctor needs to be willing to consider the implications of the fact that bacteria are being found in the tissues of sarcoid patients. The textbook explanation of sarcoidosis is that it is a disease of unknown origin, which most doctors learned when they were being trained. Today, the collection of research on sarcoidosis paints a very different picture of the cause, and therefore, suggests a treatment (ARBs and antibiotics).
The blood tests for vitamin D levels should actually be available in Sweden
since there is more concern in norther latittudes of whether or not people are actually getting enough vitamin D for bone health.
I would imagine that any physician could order the blood tests that will help with a diagnosis. It should be helpful if you see a specialist to have the information in hand from the blood tests.
The Angiotensin Receptor Blocker medications are used for a variety of conditions, so perhaps you can persuade your doctor to prescribe one for something else - for example, migraine or high blood pressure. (You could share an abstract of research supporting the use of these medications.) If you do a web search on the medication names, you may be able to find a site that lists which of them are available in Sweden. The three Trevor recommends are Benicar, Diovan and Avapro. Diovan and Avapro are the most widely available, in many countries in the world.
The antibiotics (such as minocycline) are also used for many conditions, especially skin rashes. Some people have been prescribed them for conditions other than sarcoidosis.
It is very difficult to have to be so aggressive in seeking medical treatment. I am constantly aggravated, myself, by the problems. Good luck.

Margo
 
 Re: *** ARB therapy - nuts and bolts ***
Author: John T. (---.proxy.aol.com)
Date:   05-26-03 17:37

Hi all, just thought I would let you know that with the help of some samples that the Dr. gave me to get started, I upped the dosage to the recomended 40 every eight. It has been a little over a week and the insomnia is gone. I am sleeping better than I have in years. I seem to be more tired than before, but I think I've read that others have experienced the same and it went away in time. I'm hopeful that when I see my Dr. next, telling him all that has gone on with the Benicar will convince him to write for the full dosage.
Trevor, in other posts you have said you are willing to talk with Dr.s with doubts. Is that still the case? If so, and I need the extra, what is a good time for him to call?
Thanks again for being there.
John T.
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-26-03 18:21

John,
My contact info is on the front cover of all the "Papers for Physicians" at the top right of this page, and your doctor is welcome to call. I am usually around from 10am-5pm EST

..Trevor..
 
 Re: *** ARB therapy - nuts and bolts ***
Author: John (---.oc.oc.cox.net)
Date:   05-30-03 22:00

ARB update. Benicar 40mg every 8 hours.

One week down. Positive effects still being felt. Less pain,fatique etc.

Having trouble getting adjusted to the lower blood pressure. Readings from 95/60 to 87/53. I had low blood pressure to start with around 110/80 on average. Work has been a little difficult as I do a lot of stooping and standing up. Trying to jack up the salt intake by eating sunflower seeds and drinking Gatorade at work. Hasn't really help much. I am reluctant to give up the ARB's since they are making me feel much better but the low blood pressure is a problem.

I started the mynociclyne tonight @ 50ml to start. So far no reaction after about 4 hours that I can tell. I don't have a Jacuzzi so I took a hot bath with sea salt.

I will try to keep the Benicar going until I can get the antibiotic routine down.

I understand that you can start and stop the minocycline treatment but can you also do the same with the ARB treatment? Use it only for the Herx?

TIA
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-30-03 22:35

John,
This may sound unusual, but if you get symptoms of low BP try taking a Vit D caplet 66IU "Calcium Softgel, Nature's Life Code 557". This should raise your BP quite nicely (as long as you only need to do this intermittently).

The problem with crouching using bent knees is something you will have to manage. As long as those knees are not bent you will be OK. Lie on the ground , get up, no problem. Bend knees = woozy woozy...

Once you get a good antibiotic dosage and start generating D from the herx your BP will stay higher..

You can stop taking Benicar, but remember it is prophylactic - you need a full concentration in your bloodstream before you are challenged with D. So after you feel a surge coming on it is too late to take it again

..Trevor..
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   05-30-03 22:43

John,

It's best to keep the Benicar blockade in place. The low blood pressure may be due to a combination of Herxheimer reaction and the antihypertensive effects of the Benicar. My B/P numbers are similar to yours and I have been on Minocin for 5 months now. As my Herxheimer reactions have become less intense my incidence of dizziness has decreased despite continued hypotension.

Lightheadedness with position changes in not dangerous to your health unless you are in an unsafe situation. For example if you might fall or if you are operating some type of equipment, driving a car, etc. Otherwise it is a temporary and innocuous phenomenon.

There is the temptation to blame fatigue on low blood pressure. IMO, the credit for any fatigue you feel should be given to Herxheimer.

Adequate salt and fluid intake are important. I also recently read that Vitamin E may cause an increase in blood pressure, at least initially. Since it is safe to take at up to 3,200iu per day, you may want to try this also.

I hope that you will have the confidence to tolerate a little orthostatic hypotension (dizziness with sudden position change). The benefits will make the effort worhwhile.

Best regards,

Meg
 
 Re: *** ARB therapy - nuts and bolts ***
Author: John (---.oc.oc.cox.net)
Date:   05-30-03 23:09

Thanks. I will try the suggestions to raise BP. I can't really find any permanent effects from having low BP anyway. The most anyone comes up with is that you could pass out driving a car or fall. Something about lack of oxygen to the body organs also but seems like an overreaction.

This is another good example of the uphill battle sarc patients face. The almost universal reaction from pharmacist, doctors and nurses is caution about the dosage in this treatment. However, when one takes the time to research things (with a huge jump start from the links on this site I might add) there is not anywhere near as much concern for this treatment as there is for the traditional treatments. oops, long sentence there, sorry, getting a mild herx I think

Anyway, thanks again.

Onward.
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-30-03 23:39

John,
Before you get too convinced it really is herx - have a good laugh at this article.

Then relax and enjoy life again...

..Trevor..
ps: don't forget to check back and let us know how you get on...
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Betty Campbell (---.32.221.203.acc13-dryb-mel.comindico.com)
Date:   05-31-03 19:59

Trevor,

Thank you for today's medicine which you have prescribed as above, to John. and I have just taken and had a good belly laugh.

Bradley,

I too am from Melbourne. So far only the one attempt at both the "D" blood tests, and the 25 D and ACE results came back fairly pronto, but I was told by Mayne Health (whom I used for this testing) that both the 25D and 1,25dihydroxyvitamin D3 were one and the same, and this only many weeks after my continual phone calls to Mayne Health. They finally conceded I was right and not to worry as they still retained my frozen blood and would get it done . All in all, the final tally took 6 wks. So now that I am ready to have those tests done again, I will be armed and ready with data and written word, to give to the pathology at the time of blood-draw. Incidentally, during all this bother I rang another pathology place, (Gribbles) and found I was speaking to Adelaide, and told them the story and they made enquiries and came back to me with the fact that they too use Melbourne Hospital, which is where Mayne finally told me my blood needed to be sent.

Maybe Paul, from Aus will be able to give you more help, with his experience. Best of luck,

Betty C
 
 Re: *** ARB therapy - nuts and bolts ***
Author: John T. (---.proxy.aol.com)
Date:   06-01-03 15:59

Trevor,
I am going to call my Dr. this week to get him to up my Benicar to where it should be. After taking it at 40q8d on my own, I am running low on supply. I work as a carpenter and, as a result, must be outdoors some. I also have 5 kids still at home that like to eat, so taking time off is not an option right now. I cover up and wear a fishing hat with a flap attached that covers my neck and ears. I also wear my NoIR glasses. I don't seem to be real sun sensitive, but maybe that's because I have been in the sun often enough that I don't realize how different I would feel if I could stay indoors for a while. I know that this is not the optimum situation. What I was wondering is, under these circumstances, would I be better off asking to be dosed at 40q6d, and if so, what does the safety data say as to the every 6hr dose?
Thanks for all the help you have been.
John T.
 
 Re: *** ARB therapy - nuts and bolts ***
Author: SteveUK (---.server.ntl.com)
Date:   06-02-03 07:02

Hi Everyone

Does anyone know where I can purchase Benicar or similar in the UK as I am sick of trying to get things approved on the NHS. It quite clearly would help my situation but the doctors don't beleive me.

many thanks

Steve
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Caroline (---.win.org)
Date:   06-03-03 22:12

Kevan,

Your post of 5-14 fits me to a T. I had the 'window' of excitement that I was nearing my old normal on 100mg. minocycline and I either slipped into a several months herxheimer or I cannot take benicar. I am baffled but will not give up. After several rounds of different prescription poisons by different specialists, I am convinced this is the way to beat sarcoidosis.

I am currently taking Trevors old treatment (before benicar) of Vitamin E and high dose beta carotene but so far I have felt no improvement.

I plan on trying this for another week, stop everything for two weeks and try to restart.

How are you doing now? Better? I hope you are, as it is so very disapointing to have that happen. This sarc. thing is tough, if we all can beat this we can do anything, it is not for 'sissies' (8-). Hang in there.........

Caroline
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Jan Lewis (---.lgeenergy.com)
Date:   06-04-03 06:31

I saw Dr. Baird last night. The man is a saint. For any of you in the Kentucky area, his number is (502) 339-6550. John Baird. He's alternative medicine, but seems interested about this treatment. Asked me lots of questions as to how I felt since I'd been on this program, asked about my BP, checked me for yeast, gave me another "script" for bloodwork, and a prescription for a year's worth of Benicar. My "mail-in" prescription service is now telling me I can get 90/month each month for a $24 co-pay. Of course, they've told me this before but it's denied everytime I go to the pharmacy. So, I'll keep my fingers crossed that the mail-in service will be more accurate than the drug store. We went over my recent bloodwork that I had done at our company's health fair. He said there was nothing surprising that would raise any alarms. My anemia was extremely mild. I'm continuing to experience pain in my spleen/liver since my 2 week sabbatical from the Benicar, even though I'm back on it faithfully now. May slip in an extra tablet today. I'm experiencing some nausea after taking the Minocin/Bactrim now. But, it passes within an hour or two.

I agree with Caroline, this treatment/disease is not for sissies.

Best to all with continued prayer for a total recovery,

Jan Lewis
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-04-03 07:24

Jan,
No, this disease is not for sissies. Either sissy doctors or sissy patients. That's why, in a whole century, there have been no breakthroughs.

..Trevor..
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Christian (---.ipt.aol.com)
Date:   06-09-03 06:40

Trevor,


If I want to stop temporarily ARB and Minocin, how do I do it. Can I just stop taking the meds or should I taper?


Christian
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-09-03 06:45

Christian
Neither drug has to be weaned.

Each minocycline dose is seperate, and if you want to space them 3 or 4 days apart to give you some "rest" then that is OK. These bugs grow very slowly.

Remember the ARB is prophylactic. You have to have the blockade in place before your body is challenged. That means it will take at least a day or two to become effective again, even if you slip just one tablet

..Trevor..
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Christian (---.ipt.aol.com)
Date:   06-09-03 07:23

Trevor,


Yesterday, I noticed something very peculiar. The first two weeks on ARBs, I had no significant side effects. When I started Minocin, I had this metallic taste. Saturday and Sunday were days off, and the metallic taste was slowly going down and yesterday afternoon, it was gone, but I forgot my 2 pm Diovan dose (and felt kind of better). I took the dose around 5 pm and an hour later, I had a surge of this metallic taste. What happened? Could it be that the Diovan could still potentiate the residual Minocin that is my blood (and by ricochet increasing the 1,25 D)?



So if I stop abrubtly Diovan, I shouldn't have any problem? I want to take a little break just to see how it feels.

Yesterday I had some sun exposure and this morning am paying for it. I just wanted to stay in bed. Do you think that the 25D generated is all transformed into 1,25 D or some of it is stored in fat?


On another note; I was scheduled to have tonsilectomy last december, but finaly didn't go through it. Well, since taking Minocin, they started to shrink and are practically not producing pus anymore.


I read somewhere that you used to take vitamin E. Do you think it could be added to the ARB therapy or is it a waste of money?


Christian
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-09-03 07:31

Christian,
There is a delay of 4-6 hours while 1,25-D builds up in your body.
6pm - 2pm = 4 hours
Keeping that prophylactic 6-8hr ARB dose in place is absolutely critical, by the time you notice symptoms it is too late to stop the surge.

Sunshine generates both 25-D and 1,25-D in the keratinocytes. 'Excess' 25-D is stored in body fat.

Good to hear that the tonsils are getting better, I had mine removed at age 5, but I think you will find that stopping the Diovan will be painful for about 3 days. That is not to say it is not a worthwhile experiment...

..Trevor..
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Diana (---.cache.pol.co.uk)
Date:   06-15-03 10:02

Trevor,

I am delighted to say that my GP has agreed to Valsartan at full dose, and Minocycline, and I can collect them and start when I am ready. He believes that the effect on my low blood pressure (often about 85/55) is unlikely to be very great, and says that in view of the fact that I am in a wheelchair anyway he is not sure that feeling rather faint would matter too much!

Where he differs from you is that you keep advocating that people should buy a blood pressure cuff and monitor their pressure. I am not sure if that is because most people's doctors want to know the result, or if it is actually useful to know. He says, "If we took the blood pressure and found it to be very low, then I would have no option but to say to you that you should stop doing it, and I think therefore that you would then feel that there had not been a fair trial. I wonder therefore whether we just go on the principle of ignorance being bliss."

Are you horrified at this approach? Should I monitor it without his knowledge?

Diana
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-15-03 10:28

Diana,
A very clever Doctor. He really wants to help you. What he is saying is that if he knew that your blood pressure was low then he would have to stop prescribing the Diovan. Otherwise he is at risk of being accused for Medical Malpractice. He does not want to know your Blood pressure.

It is still useful for you to know the blood pressure because it will give you a good idea of your D status. Doc doesn't realize that your BP will surge when you have a D surge.

..Trevor..
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Diana (---.cache.pol.co.uk)
Date:   06-16-03 05:35

Thanks for your advice. I wondered why everyone at the hospital always said my blood pressure was normal when I was feeling particularly rough. The answer was that normal for them is high for me. High level paraplegics and tetraplegics usually have low readings for blood pressure.

I have ordered a semi-automatic Omron cuff from Medisave.co.uk. In the past I have had a lot of bruising from ones that inflate automatically and squeeze me much tighter than necessary. I need not tell my GP the readings!

Diana
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Diana (---.cache.pol.co.uk)
Date:   06-16-03 06:04

I know my D results are 3 months out of date (March 4th), and since I have been out more now that I can drive again are probably higher than they were, but after I have been on the Valsartan for a while will I need to take a small amount of D supplementation or be less careful of diet and sunlight? Because of abstinence of D intake, 25D back then was only 7.2ng/mL and 1.25D 30.0pg/ml even though I had a D ratio 4.2.

Diana
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Mike (---.res.east.verizon.net)
Date:   06-17-03 12:54

OK, got pretty good cooperation from my pulminologist today. After all of the usual disclaimers she set me up with both Benicar and Minocin and a

She was a little spooked by the Benicar dosing and asked me to start with 20mg qd for a week, 40mg qd for a week, then come back for antother round of tests and labs before we ramp up.
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-17-03 13:10

Mike,
Once a day dosing doesn't work.
Not even a little bit.
Usually makes things worse.
There is a paper here from 2001 which explains why

..Trevor..
ps: If ARB therapy had been easy to invent then everybody would have done it... You have to follow the instructions...
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Mike (---.esr.east.verizon.net)
Date:   06-17-03 15:31

Yeah, yeah... Talked through the issues with her, but she wouldn't do the full Benicar dosing out of the gate since she wasn't very familiar with the drug and I asked for 4x the label max (even though she confirmed that 1x gives 90% pressor effect).

My feeling is that I'll give the qd dosing a try -- I can probably put up with anything for two weeks (I'm not highly symptomatic now). If my blood hasn't turned to sludge on 40 qd for a week, she said she'd go up and even carry the inevitable fight with the insurance company.

I'm thinking that it will take me more than two weeks to get scrips from any other doc, so her approach looks like the fastest way to the theraputic track, altough I expect to be spinning wheels at best until the end of the month. May have to re-evaluate if psychotic episodes start...

This shouldn't do any real harm, right? When I go to 40 a day, should I split do it in two doses q12h?

--Mike
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-17-03 15:50

Mike,
Some folks have split the 40mg tablets into three, and taken one third every 8 hours. That works, although it is not as good as a total blockade. You can try and do the same with 20mg, but it is a lot more difficult...

"4x the label max"??
You can find the prescribing information at this URL (an acrobat file)
It clearly says "dosage must be individualized" and talks about "Olmesartan medoxomil doses greater than 40 mg had little additional effect" and "Repeated administration of up to 80 mg olmesartan medoxomil had minimal influence on
aldosterone levels". I can't see anywhere where it says 120mg is 4x maximum? In fact the FDA file contains data from a study showing that 160mg a day is a safe and linear dosage.

"dosage must be individualized" and sarc patients have a lot of extra Angiotensin receptors to block and thus need a higher dosage. Here is a paper you can show Doc which documents receptors in the granuloma.

Don't you wish Doctors were trained to ask questions instead of making dogmatic statements...?

..Trevor..
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   06-17-03 16:49

Hi Mike,

How many Benicar did your doctor give you? We've had a few docs cagey enough to hand out the usual prescription dose for a months supply and imply that they couldn't control what you do with it. This lets a timid doctor off the hook should their fears come true when you take 40mg every eight hours. You could return in a week, with or without documented blood pressure readings, and tell her you felt that you had to follow documented protocol and that you did just fine. Then ask again for a prescription with a dosage that will help you, not hurt you. Hopefully you have some sense if this strategy might work.

Meg
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Tammy (---.cox-internet.com)
Date:   06-17-03 18:49

Meg,

The Doc gave me the rx's for the Benicar and minocycline. He was impressed with the data and said I really did my homework. It really wasn't my homework, but a lot of others hard work! I told him I wanted to get well and that was my motivation. He said that they (research) have felt that it was a bacteria that caused Sarc, but have been unable to pinpoint it. He compared it to legionnares (spelling?) in that they knew it was an infection of some kind but it took a lot hard work to nail it. You guys keep up the good work!
Question # 1,000,005:
I usually take my BP med at night... Can I do the same with the Benicar or do I need to take it with the mino in the morn? I am still tapering off the pred now at 10mg qod x 5d, then 5mg qod x5d. Is that sufficient? The last time I got off pred, I thought all my bones were going to break! He really just had me stop the pred, but I am afraid to, since I have been on 20mg qod for 30 days, and continually since 4/21/03 at doses as high as 60mg. My bones hurt now and that worries me , especially my hips and middle of my shoulder blades. I know I NEED to worry about this. Any info would be appreciated.
Thanx! ~Tammy~
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Margo4 (---.adsl.duke.edu)
Date:   06-17-03 19:17

Trevor,

Good news today! I prepared a long letter, with documentation, about my daughter's health problems, the treatments being discussed by the various specialists, and support for treating sarcoidosis with Benicar and antibiotics. I included a quote from your paper, mentioning the interaction between Benicar and TNF-alpha. The letter made it easier for the doctor to understand the whole, complicated picture. After reading it, he told me that there was only one conclusion - it was time to try Benicar!

He is concerned about dosing, so wants to begin with 20 mg three times a day, and has asked us to check the blood pressure. He has given me the go-ahead to adjust the dosing up, as needed, and as long as my daughter tolerates it. We are to report back in one month.

The research and references I found here were essential to convincing him. As he says, this is all new to him, but with the documentation of the treatment and the risks of other medications (Enbrel, remicade, methotrexate, cyclosporine), he was comfortable going ahead.

How do you think that 20 mg of Benicar three times a day will compare with 300 mg of Avapro, split into three unequal doses? The Avapro was certainly not enough blockade.

Thanks again.

Margo
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-17-03 19:31

Margo,
20mg every 8 hours should be better than 100mg of Avapro q8h. My initial suggestion would be to move it to q6h when she can (yes, I knows that she sleeps for 10hours, you are going to have to figure it out). Once she sees how pain-free she can become with the frequent dosing, then maybe she will learn to wake up when she needs more (like I did)...

Great news. Great job, Margo

..Trevor..
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Margo4 (---.adsl.duke.edu)
Date:   06-17-03 19:40

Trevor,

Maybe she will learn to wake up for the medication. She has occasional days now when she feels pretty well, and can certainly do more than she has been able to do for a year and a half.

Margo
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   06-17-03 20:03

Margo,

Good for you and congratulations! I love your idea about writing a letter. An empassioned written appeal may just do the trick for other doctors too. They are so busy but a heartfelt letter explaining the protocol and how badly it's needed isn't likely to be ignored. My doctor responded to just such a letter so perhaps others will try it too.

How about offering your daughter some kind of reward for waking up at night to take her pill? She may be too young to recognize its benefits yet but most kids respond to a reward and I'd say she deserves one.

Please give her a big hug for me.

Meg
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   06-17-03 20:05

Congratulations, Margo,

It is strange that sometimes we have to be able to explain this forwards and backwards to our doctors before they will accept the information, but you deserve an "atta girl" for hanging in there! I know others will be able to use your patience, persistance, and determination as a model, because you are succeeding in getting your daughter the care that is helping her regain her life and health.

You have my admiration.

Belinda
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   06-17-03 20:36

Hi Tammy,

You sound so excited about getting the Benicar and minocycline that I hate to rain on your parade. But I want to emphasize that it's imperative that you follow this protocol carefully if you want to ensure success. There are lots of sarcoidosis experts out there who will tell you that they have tried minocycline for their patients and it didn't work but we know they didn't do it correctly.

You're doing the right thing by weaning off the Prednisone. Every other day dosing has no known advantage and some report that they are miserable on the off days. Since your doctor gave you no instructions, it's up to you how quickly you are willing to decrease the dose and how well you tolerate the withdrawal symptoms. NSAIDs may help with the pain and are okay to take. Read the thread on weaning from Prednisone for other ideas.

You said your doc prescribed Benicar at 20mg a day. See Trevor's note and my note to Mike just above yours on this thread. That dose is worse than nothing. You need to dose according to protocol at 40mg every eight hours. This is the minimum. How you take those pills the doctor gave you is up to you. But setting up an effective inflammatory blockade will make weaning from the Prednisone a little easier.

I would not recommend that you take the Minocycline until after you are off the Prednisone as you will have enough to deal with for now. Not knowing your D-metabolite levels, you're at a disadvantage. If they are really high, you should start out with a low dose. The germs grow slowly and they'll wait until the Benicar gets your 1.25-D lower so the Herxheimer reaction won't be so bad.

I suggest you plan on going back to doc in one week and requesting a prescription for a dosage of Benicar that will help you, not hurt you. This is just too important, Tammy, not to get it right. You're so close and you did the best you could but you'll have to pester him again in order to get on the road to recovery.

Take good care,

Meg
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Mike (---.esr.east.verizon.net)
Date:   06-19-03 04:58

Hi Trevor and Meg.
Wendy here! (Mike's wife). I am writing because Mike took your advice to go ahead and treat with Benicar in the proper range of 40mg Q8 hours (despite his doctor's advice to start slow).

Mike had taken 20 mg on Tuesday (6/17) at noon and actually felt good for about 7 hours after which time he started to have a headache, nasal congestion and bad cough. He had to go to a client site yesterday (6/18) so did not take anymore benicar until last night (6/18) around 10pm. All day on 6/18 Mike had increasing cough, nasal congestion and headache.

He woke up at 4 am today (6/19) just six hours after his first 40mg benicar dose with terrible cough, muscle weakness, sinus pain and congestion, headache. He took another 40mg of benicar at that time and developed slight dizziness and fever (100.7) and continuation of the cough, weakness and sinus symptoms.

I assume this is what you would expect -- a worsening of his typical sarc symptoms in response to initial ARB treatment. But, I got a little nervous since we are kind of acting against his Doc's wishes.

My questions are:
1. How long can he expect this worsening of symptoms to last?

2. Can he take tylenol or motrin for the fever and aches?

3. Should I be doing anything other than offer emotional support, chicken broth, rest, fluids, close monitoring etc. for him?

4. Is it correct that he should repeat the next 40mg benicar dose exactly 8 hours after his last one whether he feels he needs it or not? And earlier if he gets to feeling worse?

Thanks for your help. I am really excited about the possibility of Mike's eventual recovery.

Wendy in Virginia
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-19-03 05:26

Wendy,
The folks who have most trouble adjusting to the lower values of 1,25-D induced by Angiotensin Blockade, tend to be the ones that need it most of all. However, there are some situations where a misdiagnosis has occurred, and where Angiotensin Blockade would not have the desired effect.

In Mike's case I would note the following things
1. He has not had his D metabolites tested, and therefore there is the possibility of misdiagnosis
2. He has not isolated himself from Vitamin D (I am assuming this, the only way to tell for sure is to measure the 25-D level)
3. Isolation from sunlight is not easy. It would usually require a period of vacation or telecommuting

I would not recommend that any ARB therapy be taken to the point of pain, and this is the point you are describing. Not many patients have reported this many problems getting onto an ARB blockade

The fever is what particularly worries me. There should be no fever. It is theoretically possible if Mike had a real high level of 1,25-D but it has never been reported before.

1,25-D controls many other hormonal systems within the body, including PTH, and it is the changes in these as the ARB causes the 1,25-D to drop which cause so much trouble.

I would suggest talking with Doc about discontinuing Benicar until Mike has had a chance to get his D metabolites tested and you have had a chance to really work on isolating him from D intake. This is absolutely critical, as it is the Vitamin D level which drives the inflammatory biochemistry. You will need to start reading the labels for all foods, even Chicken Broth (which often includes Monosodium Glutamate, a nervous system stimulant) and Tartrazine (yellow #5), an immune stimulant

I wish there was a quick way to go from advanced sarcoidosis to full cure but it takes steady work, and quite a lot of time, dedication and energy. But what Mike is going through is not necessarily part of that transition.

..Trevor..
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Mike (141.156.44.---)
Date:   06-19-03 06:09

Trevor,

Thanks for getting back to me so quickly.

Here's a bit more info to clarify.

1. D metabolites were drawn (6/16)and are pending.
2. Mike has isolated vitamin D from his diet since Saturday 6/14.
3. Mike has isolated from sun by staying mostly indoors, wearing long dark clothing, hat and sunglasses since 6/14.


Also, our kids were sick last week with Ear infections and bronchitis and Mike thinks he caught their cold and was already in the process of developing some sinus problems which he was taking sudafed and antihistamine and tylenol for prior to starting the benicar. He stopped doing so on Monday because he did not want to risk having any kind of drug interaction. (Incidentally, sinus pain and headache are NOT part of Mike's typical sarc symptoms). His sarc symptoms are cough, joint pain and skin granulomas.

Mike thinks he probably has a sinus infection, independent of his starting benicar.

Is there any chance we could talk on the phone to discuss this in more detail? I know that is asking a lot of you but Mike feels it would help us to make better decisions.

We appreciate your time.
Wendy
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-19-03 07:32

Wendy,
An infection would certainly explain the fever. Sometimes 'sinus' is a herx reaction from sarc, so it must also be recognized as a sarc symptom. This makes diagnosis difficult

Keep it steady-as-she-goes and let's wait for the blood. Doc (or the nurse) should be able to call the lab for verbal results any day now. Make sure you get the raw data, though....

..Trevor..
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Lana (---.dialsprint.net)
Date:   06-23-03 06:36

Trevor,

I've been taking my Benicar every 6 hours - I have gotten to the point where I can feel if I waited too long. That's how I know to take it every 6 instead of 8 hours. I also notice that about 1.5 hours after I take it, the constriction I feel in my throat seems to let up somewhat - I can raise my arms over my head briefly - I used to could not do this and breathe at the same time. There have been no problems other than insomnia and I need to know if this will pass. I have not had a total of more than 8 hours sleep in the last 3 nites. My eyes are bulging out on top of my usually cheery cheeks. Hubby said cut back on the Benicar but it's helping the swelling so I need to keep it. I'm still at 35 mg pred but will go down to 30 in a day or so. Thanks, Lana
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Kevan Woodcock (---.pacificinsight.com)
Date:   06-23-03 08:56

Hi Trevor

Can i take Diovan only when i get bad herx to help relieve the symptoms?
I stopped taking diovan regularly after about a 3 month trial, it made my BP drop too low and i felt quite fatigued. I felt much better when i came off it and decided to up my minocin dose from 100mg to 150mg every other.. i immediately started feeling very unwell, typical sarc symptoms for me as well as some additional stuffy/ runny nose going on. I was unable to think straight which is very typical of my sarc symptoms so the next day i took the 150mg again, and then the next day i did it again. I felt even worse and was even more unable to figure out when i should or shouldn’t take the drugs so i finally decided to stop taking everything until i was more coherent. I waited a week and then started the minocin again but almost 3 weeks later i am still very unwell and spending all my spare time in bed. So, can i take the diovan only occasionally to try and help me through this and other herx attacks?

PS, I might have posted this just a second ago only half written by accident. Sorry if i did.

kind regards
kev
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Jan Lewis (---.lgeenergy.com)
Date:   06-23-03 09:13

I went off of Benicar again, myself, for a few days. . . My BP dropped to 85/53 and even lower (77/53) and I was getting so dizzy that I actually fell. So far, I'm doing ok. The only thing that happens when I take the Minocin/Bactrim together is I get nauseated and then feel "hungry" all the time. If I just take Minocin, I don't experience anything. Worked in yard for 2 solid days and have felt fine. The sun doesn't seem to bother me like it does others. Will have results from repeat bloodwork by end of week. Am hopeful...

Jan Lewis
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-23-03 09:26

Kevan,
I have answered this question before. ARBs are a prophylactic drug. Search for the word prophylactic on this topic. You have to put a prophylactic in place BEFORE it is needed.

Jan,
Bactrim will get at additional bugs, and there are no doubt some living in your GI tract. There certainly were in mine.

But I would suggest you stay with Minocin unless there are specific problems it is not hitting. I used it when I was fixing my eyes and ears, where Minocycline needed a bit of help. But Minocycline will protect all your organs OK (except maybe the brain).

..Trevor..
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-23-03 10:00

Lana,
I always say that Benicar needs to be taken on a 6-8 hour cycle. Six hours is often the extent of its useful blockade. It depends on a stack of factors, and

"Dosage must be individualized"

Sometimes I have taken it every 4 hours to get through a particularly rocky patch.
Disclaimer: Talk with Doc if you have to deviate from what he/she advised.

..Trevor..
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Caroline (---.win.org)
Date:   06-23-03 12:07

I have not yet found a way to take benicar. i have tried jumping right in at the recommended dose of 40mg tid. didn't work, just felt sicker and sicker then quit,

tried to gradually titrate to the proper dose after having quit for a couple weeks, including minocycline.

tried benicar alone.

continued feeling very ill indeed. rested about two weeks with neither drug and tried bactrim ds and minocin after working up to 40mg tid benicar, had to quit.

lastly, i tried to again gradually titrate the dose. today and yesterday i can hardly put one foot in front of the other. all my sx. are in full force. as of yesterday, i am off benicar again. my last couple days consist of getting out of bed, eating lightly and laying on the couch. lunch, couch; dinner, couch; and then bed. i can't walk unassisted by furniture, walls or a helper.

seems it is a wonder drug for the majority of folks here, just not me. caroline
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-23-03 12:16

Caroline,
You and Kevan seem to be having trouble when your Th1 immune response is suppressed. Both of you had (relatively) low D-Ratios to start with.

You are doing the correct thing. Let's see what happens with Minocycline alone. Please keep us updated, as I have a theory what is happening in your case, but I need confirmation first. Let me know what dose (up to 200mg qod) you get herx at, Caroline.

..Trevor..
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Caroline (---.win.org)
Date:   06-23-03 14:01

trevor,
yesterday i dumped half of the minocycline and took 50 mg only. today i continue to be so sick that i don't know if it has been exaserbated by herx or not. i will again take 50mg. tomorrow and see what happens. i hope you do figure out what is happening, if anyone can you will. this is so very disappointing. i have never rebounded from the first round of benicar (which was begun after abx.) but still remain dedicated and cling to the hope of minocycline. caroline
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-23-03 14:19

Caroline,
Wait another day. Three days between the minocycline doses so that you can be sure whether the dose makes you worse. This is the critical thing I need to know - are you responding to the minocycline with herx, and at what dosage. It is likely that you are having trouble at 50mg, other patients have done.

..Trevor..
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Christian (---.ipt.aol.com)
Date:   06-23-03 18:18

Trevor,


Earlier in this thread you said:

"But I would suggest you stay with Minocin unless there are specific problems it is not hitting. I used it when I was fixing my eyes and ears, where Minocycline needed a bit of help. But Minocycline will protect all your organs OK (except maybe the brain).


I am just curious about why Minocycline wouldn't do it's job in the brain.


Bets regards


Christian
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-23-03 18:32

Christian,
We are quite lucky that Minocycline does not penetrate all body tissues and organs at once. Otherwise the first dose would kill all the bugs and give so much herx we would be visiting the ER room.

But it does penetrate most tissue, and it is best of all the tetracyclines at doing that (twice as good as doxycycline). However, some parts of the body are protected against blood-borne proteins and other pathogens. The brain, eyes and ears are included in this category, with the brain hiding behind its "blood-brain barrier" which stops all larger molecules (like the heavy proteins) from getting to it.

Sulfa/Trimeth (Bactrim DS) is renowned for its ability to penetrate tissues, especially the ear and the eye. It seems to have pretty good tissue penetration in the brain, too, judging by the type of herx it induces.

..Trevor..
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Christian (---.ipt.aol.com)
Date:   06-23-03 18:59

Trevor,


Does that mean that Minocycline is not the best choice to treat Neurosarcoidosis?

Christian
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-23-03 20:54

Christian,
No, Minocycline is the best first-line attack. Bactrim is a backup supplementary antibiotic if Minocycline can't do it all on its own.

..Trevor..
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Mike (---.esr.east.verizon.net)
Date:   06-24-03 07:47

I'm back, after a nasty sinus infection which was eradicated with a quick course of Zithromax. I'd tolerated this for months at a time before as an experiment. My old doc had some research indicating it effective in reducing inflamation for some autoimmune patients (maybe actually killing a few CWD bugs?)

Definitely noticing symptomatic relief from cough and skin lesions based on Benicar. BP (and, oddly, my low-grade fever) were definitely down when Benicar was at theraputic levels. Symptoms return within 5-10 hours of 40mg dose. BP never drops below 100/60 even on q6h dosing. Fever is doesn't recur now at all.

Here are my first set of numbers (taken 7 days ago):

ACE 63
1,25 D 72
25 D 17

for a D-ratio of 4.2. I hate to be a follow-the-crowd type, but I'm afraid my symptoms, labs, and ARB response put me squarely in line with y'all.

Glad to have finally graduated from the placebo group. Will start Minocon next week if everything still looks good. Thanks, Trevor.

--Mike
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Caroline (---.win.org)
Date:   06-24-03 08:34

Trevor,
In your response of 6-23, you said that the, "Th1 immune response is suppressed" 'might' be the cause of both Keevan and I having problems adjusting to ARB therapy. Is there any way to reverse this, other than time, and start feeling better?
Caroline
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-24-03 14:09

Caroline,
The key is to figure out what is happening in your body. I have developed a lot more new knowledge about this as a result of the collective thinking about SARS that I have been involved with over the last month or two.

First step in that process is to determine whether you get herx from minocycline, and at what dose, and what particular symptoms are most noticeable. Herx confirms the so-called Th1 immune reaction which drives 1,25-D and sarc.

I am still assuming that the cytotoxics (cell-killing-cancer-drugs) that you have been given did not cause any longterm harm. So first we need to pin down the herx reaction, then go forward from that point.

..Trevor..
ps: we already have two data points - that your D-Ratio is low and that ARBs made your symptoms worse.
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   06-24-03 20:25

Kevan,

You write that Benicar lowered your B/P and made you feel tired. IMO, low blood pressure does not cause fatigue. But Benicar may make you feel fatigued as a result of its powerful effect on 1,25-D. As that hormone is lowered fatigue may occur. This is to be expected and not a reason to discontinue Benicar.

Taking Benicar at the proper dose and schedule is essential. Get that inflammatory blockade in place with 40mg every 6-8 hours. This will help with the Herxheimer reactions but may not eliminate all your symptoms. Some of it we just have to tough out or lower the dosage/schedule of the minocylcine.

Meg
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   06-24-03 20:33

Lana,

Sleep disturbances, including insomnia, are a common symptom of fluctuating levels of 1,25-D. The Benicar will lower your 1,25-D and then the minocycline temporarily raises it. So it is not the Benicar itself that is to blame and discontinuing it, as you indicated, would only cause more problems. I believe your insomnia will resolve when your level of 1,25-D is more stable with only occasional increases related to your minocycline dosage. That is, if you stay out of the sun!

Meg
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Tammy (---.cox-internet.com)
Date:   06-26-03 19:12

Hello,

I have been on Benicar since the 17th. My BP is fine. I am completely off prednisone. (YEAH!) I am now having pitting edema in my legs and ankles. I had this before the pred but NOT during...ever.Will this eventually go away the longer I am on the Benicar? Is there something I can take to reduce the swelling? Any meds ok? Trevor said HCTZ is not good for a sarc's kidneys. How about a loop diuretic like lasix or something? Would the needed potassium interfere with the minocycline regimin? Spironolactone? Anything natural? Thanx!
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   06-26-03 21:11

Tammy,,

I don't know if the peripheral edema is related to your sarcoidosis. If it is, it should resolve with treatment. In the meantime, you'll need to ask your doctor if it's necessary to treat it now and what medication he recommends. Limiting salt intake and elevating your legs may help. Trevor will be back Saturday and I'm sure he'll respond if he has any other suggestions.

Meg
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Karen (---.brsr6.xdsl.nauticom.net)
Date:   06-27-03 14:03

Trevor,
A few months back my doctor agreed to start the ARB therapy -and then I had my pressure taken and it was extremely low- so she asked me to come back and have it measured again before she prescribed the medication.

It took me quite awhile to go back and when I finally did-my pressure was more normal. I left the protocol for ARB therapy with her nurse and asked the nurse to have the doctor prescribe the Benicar and I gave the dosage. When I went to the pharmacy to pick up the prescription I was surprised to see she prescribed Atenolol 25mg once a day. Is this prescription worthless for what I am trying to accomplish? I have used it in the past to control an irregular heart rhythm.

I am eager to start Minociin but I want to get my "D" level down.

Thanks,

Karen
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   06-27-03 16:37

Karen,

Atenelol is a beta-blocker used to treat hypertension. Since you are not hypertensive and you asked the doctor for Benicar, it's a puzzle as to why she ordered it. As far as treating sarcoidosis is concerned, it is worthless.

Perhaps if you call her and explain the need for an effective angiotensin receptor blocker, she will comply.

Good luck,

Meg
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Caroline (---.win.org)
Date:   07-01-03 07:26

hello trevor,

i hope this dosage information is helpful in determining why i cannot take benicar successfully.

I took 50mg. minocycline on weds, june 25th. at 7:30pm. actually i felt a bit better at 10:30pm. but the next morning i was hit with herx. i felt very weak and fatigued. the neuropathy of my left hand/forearm was pronounced. both feet were painful and burning.

yesterday morning at 0930, i again took 50mg. by 1045, my left arm/hand neuropathy increased very much. my legs are very heavy, and feel like my feet are encased in concrete with pain and also burning. i am very fatigued. I had a sore throat, sinus congestion and a cough that stayed with me short term of about a half hour. this herx. appeared very quickly in comparison to june 25th.

trevor, i am anxious to hear your thoughts. previously, i have taken 200mg and added bactrim ds every 12 hours in an attempt to break the plateau i seemed to be experiencing. i felt terrible but really no worse than i do now.

my last dose of benicar was june 22nd, morning only. additional drugs i take: baclofen for spasticity, of about 30mg spread thoughout the day. mirapex for RLS at 1mg and tylenol every four hours for muscle pain. no other prescribed or OTC drugs.

trevor, thank you for your thoughts on my benicar dilemma,
caroline
 
 Re: *** ARB therapy - nuts and bolts ***
Author: ~Tammy~ (---.cox-internet.com)
Date:   07-01-03 10:53

Hello,

Well, I'm off to see the doc today. I going to ask him to do the d-metabolites, ACE, serum Ca, urine Ca, Complete metabolic, and maybe an ESR. I want to have a baseline to track my progress. Due to the elevated hepatic screen I had before, I want to see if anything is acting up. I've had less pain in my rt. upper quandrant since I've started the therapy. My sinuses are still acting up and have alot of facial pain. They cultured and found nothing except what normally grows on the skin. I'm not convinced there's not an infection...neither is the DR., due to the colored discharge from my nose. I'll wait a little longer and see what happens. Wish me luck in convincing the doc for these tests!
~Tammy~
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-01-03 12:54

Caroline
The herx at low dose is actually good news. You should take the minimum antibiotic dose which gives you noticeable herx. It is possible the higher dose was saturating your tissue, Maybe the MTX had still not left your system (they say it stays around for months). I really don't know. Anyway, the observation that 50mg will give you herx gives plenty of (renewed) hope for remission, as time goes by.

I do sympathize with your suffering, however.

I am thinking the trouble you had with Benicar might be related to this sensitivity. I hate to suggest this, but is it possible that your 1,25-D blood draws were incorrectly handled on each occasion they were performed? Maybe the nurse had outdated procedures? If the blood is not frozen within 3 hours it apparently lowers the value of 1,25-D that the lab reads.

It is also possible that you may have a low-level viral infection depressing your 1,25-D levels. Viral infections are a known side-effect of MTX. This is far less likely, IMO, than that the blood draw was incorrectly processed.

..Trevor..
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Caroline (---.win.org)
Date:   07-01-03 14:12

trevor,
thank you for your reply. i have had each draw at quest diagnostics and each time the tech. checked the procedures for proper handling, so i only have that to go on as far as quest's handling.

that you feel i may still acheive remission gives me some hope. my 'hope' tank is running on close to empty lately. a few questions.....

- has this happened to anyone else to your knowledge and the worsening of sx. reversed?

- i will continue at 50mg. minocycline until i no longer experience herx before increasing the dose. do you agree with that?

- do you have any thoughts as to why i could previously tolerate 200mg plus bactrim and feel no worse than i do now?

- can you explain in simple terms your thoughts regarding 'suppression of the th1 immune response' being problematic that you mentoned earlier in this thread?

thank you for your help, caroline
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   07-01-03 17:45

Tammy,

You can expect that the ARB will have lowered your 1,25-D somewhat but the minocycline will temporarily raise it. You might want to time the testing for during a Herxheimer reaction. Remember, these are only guidelines. You've already got the meds you need so you have nothing to prove. Your doctor sounds great. It should inspire others to go out and find one of their own.

Belinda recommends the following coding for the tests:

The diagnostic code (ICD9) for sarcoidosis is 135.
If another organ is involved, as in cardiac sarcoidosis, the doc should use 135 as the primary diagnosis and use secondary coding to indicate cardiac.

As for the current procedural codes for the lab work, it is on the pages linked in Trevor's instructions.
1,25-dihydroxyvitamin D (serum) is 82652
25-hydroxyvitamin D is 82306
ACE is 82164

Congratulations! Your courage and persistance paid off.

Meg
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Tammy (---.cox-internet.com)
Date:   07-01-03 19:00

Hello,
Thanks Meg and Belinda for your help! I look forward to finding out the results if only for a baseline and ....curiosity! Next to the hip and joint pain, I think the DEEP fatigue is the hardest to deal with. I'm tired of being tired! Being PROACTIVE in my health has really helped me stay focused on getting well. I too hope others will seek out new drs and find those that are not afraid to step into new territory. Again, thanks! Y'all have a great night!
~Tammy~
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Lana (---.dialsprint.net)
Date:   07-01-03 21:27

Trevor, et al -
I have what may seem like a ridiculous question given the amount of info available on this site but here goes: is Benicar suppose to actually reduce the inflammation in my larynx (laryngeal sarcoidosis) when it is in my system or am I just imagining it? Can the sx's ebb and flow that much and that quickly? over a 3 to 4 hour span? I have read and read trying to understand all of the actions and attributes of this ARB but I can't determine the answer to my question. I will be going down to 27.5 mg of Pred tomorrow and stay there for a week. My throat is still very puffy but I think the ARB may be helping that. Hope so, anyway. Thanks, Lana
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-01-03 22:45

Lana,
The half-life of 1,25-D is about 4-6 hours. So the symptoms do ebb and flow in a very short time. Usually they come on pretty quickly (4-6 hours) and then dissipate more slowly (over a day or two). Benicar does make them dissipate more quickly. I suspect that some of the sx are due to the 1,25-D and some are due to the resulting Angiotensin II, and these may have a longer half-life.

For example, stress (andrenaline release) is precipitated by the Angiotensin II created from the 1,25-D not by the D itself. benicar acts pretty quickly on this sx (at least for me)

..Trevor..
 
 Re: ** ARB therapy-nuts and bolts
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-06-03 18:41

On 16 Jan 2003 Christian asked some questions which I did not answer. In any case, my answer would be a little different these days - so here goes...

1) If you kill all the bugs, why ARBs are usefull afterwards? Because from what I understand, ARBs disrupt the inflammation cycle and if there is no more inflammation to disrupt, why continue the therapy?

The issue here is whether all the bugs can be killed. At this point it seems as though they can. I now have a pretty good idea of what type of bugs cause the hyper-inflammation of sarc, and what their mechanism of action actually is, and I would expect that eventually there would be no need for ARBs. That is one of the reasons I have started to muse about a "cure" rather than just talk about remission - as more and more folks recover with such innocuous antibiotics (as the tetracyclines) it seems pretty clear that ALL the bugs can really be killed....

2) Because of your genetic sarc predisposition, will you take ARBs for the rest of your life?

No. The mechanism of action of the bugs is to actually create the hyper-immune response. As more of us get closer to remission (or cure, or whatever) the sensitivity to everything drops. No more huge welts from cat scratches. No more allergies from pollen. It is the bugs that are creating the hyper-sensitivity, and as they are killed off the body is returning to health....

3) Why the immune system of sarc patient seems to be in a loop and cannot get rid of these bugs? Also does it mean that every time the body will be in presence of these bugs, it will response in the same fashion. i.e production of granulomas that take years or for ever to clear out?

Yes, if the bugs infect you again, or if you allow the remaining ones to get a grip again, the hypersensitivity will return.

4) Do we know what part of the human genome has a mutation? Are people working on that?

No and No. The sarc specialists are still fighting over whether 1,25-D is important in sarcodiosis, the more important questions haven't been asked yet...

6) Why some people have normal ACE levels (like myself 26 U/L) and have sarc. Is there an explanation for that?

ACE is an intermediate biochemical. It is a precursor to Angiotensin. It has no direct action in the inflammatory cycle other than to cause the release of quantities of Angiotensin II. I guess that is why it is relatively insignificant in some folks, depends on your Renin Angiotensin System activity level...

7) I don't know if the ACE that is measured has some link with the ARBs therapy. Could you tell me?

See (6) above, and our description at "the Angiotensin Hypothesis" in our paper.

Thanks to Sue (who reminded me that I had missed these questions in January...)

..Trevor..
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Kevan Woodcock (---.pacificinsight.com)
Date:   07-10-03 13:35

Hi
I have recently been recovering from an extreme herx reaction. i accidentally overdosed on the Minocin quite significantly for 2 or 3 days in a row. I was not on any ARBs at the time. It has taken 5 to 6 weeks to start feeling better but im still not back to where is was before the overdose. I have just started Avapro, ive been on it for 1 week now. My BP has gone down from 120/80 to 100/70. I feel fatigued and very sleepy. I do not feel irritable which i do get during some herx or sarc flare ups. I was reading in an earlier post that the warm, quite pleasant tired feeling is due to lack of Vit D, and the tired / irritable feeling is due to too much vit D during herx???
If this is the case then perhaps i am suffering from too lower Vit D due to the Avapro. (i am not taking minocin presently). My D ratio before i started any treatment was low,1.19. (D25 = 67nmol/L, D1,25 = 80nmol/L)
So perhaps the avapor is lowing my D too much? do you think i should just wait another week to see how Avapro goes befor taking minocin again?
Here is a controversial thought...Due to my low vit D ratio, should i start drinking fortified milk again in an effort to stop the effects of avapro and hopefully raise my d levels a bit to a comfortable level? This would perhaps allow me to use the sarciod symptom protecting effects of avapro and not suffer from the too lower vit d effects.???

Kind Regards
Kev
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-10-03 16:17

Kevan,
Avapro will take a while to work. It is not as effective as Benicar. I assume you are using 150mg every 8 hours.

You could always try a Vit D bolus. Limit it to 66IU or so, 400IU can get you into deep trouble. The effects of a single 66IU bolus should be gone in a day or two. Check the labelling on your milk, but you are better to buy a tablet or capsule, because the quality control on D concentration in milk is not very good.

It is possible your own immune system is still active, and not suppressed by high levels of 1,25-D (which you don't have). You might be best to let it do its job, keeping your antibiotic dosage low.

I would not charactise fatigue as being a simple result of Vit D levels - it is more complex. Some patients do not get fully over their fatigue until quite late in their course of therapy.
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Sue Sullivan (---.dsl.stlsmo.swbell.net)
Date:   07-10-03 21:31

I'm a cns victim. Had 5 docs. Eventually decided the pulomary doc would monitor the Prednisone. Haven't been able to get off it. Now internist is main doc. She's been reading the info from sarcinfo. I sent copies of a couple of the articles from the home page and the web address to the pulmonary doc, neurologist, and rheumatologist asking for a consult with internist. Got a letter from pulmonary doc today supporting the treatment protocol. His only concern was weaning off Prednisone too quickly and suggested it be watched carefully and possibly seeing an endicronologist (just what I need is another doctor!) if problems arise.

Thanks to Trevor, Meg and all who have posted throughout this site, I am ready to start treatment and know what I have to watch for and where I can go if I have questions or need help. Brovo to all of you.
Sue
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Donna (---.jan.bellsouth.net)
Date:   07-14-03 06:54

Trevor,

I have taken 5mg Benicar (once per day) on Sat. (BP 120/70, 6hrs later) and Sun. (BP 100/50, 3 hrs later). Is it normal for the bloodpressure to drop alot with only taking 5mg? I had some interesting reactions (listed in order of occurance): sinus area-forehead throbbed, rght side of neck by ear down to base hurt bad, stomach area and upper rght side painful-especially upon movement, lower back throbbed, tender feet, weak muscles-all over.

Sat. night I slept 11 hrs straight through and actually felt like I had slept. Sun. took dosage and had similar reactions, but overall felt better. I do not take the Benicar right after getting up. Could not sleep Sun. night (maybe 4 hrs sleep). I take the Benicar about mid-morning when I eat.

My doctor has asked me to keep a chart on my bloodpressure readings, to be done several times a day. I go back on Friday to get the results and possibly to change dosage of Benicar. By reading this site I have learned kind of what to expect. Do you have any other suggestions?

Donna

P.S.-If I have made any spelling errors please ignore, typing is tough right now due to thinking processes not together.
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-14-03 07:04

Donna,
Benicar doesn't work properly for sarc patients when taken once a day, in fact, it can make things worse. Please read the Frequently Asked Questions and the reference linked from that document.

I know that Doc is trying to help you, but he will most probably fail. You can help him by suggesting you break the tablets in half and take half every 12 hours, but even this is an inneffective Band Aid measure.

All you have found so far is that Benicar affects you profoundly. The secret is how to vary the dosing so that all the effects are positive ones. this is the riddle that I solved. Every 6-8 hours does the trick...

..Trevor..
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Sue (---.ssa.gov)
Date:   07-14-03 13:22

Hi everyone,

This past Sat. was one of my first days being out in some sun for a company picnic. I did carry an umbrella and tried to stay in the shade as much as possible but Sat. evening was something else. Very sore in my sides and back but the strange thing was being so cold. I went to bed with a robe on but then had to get up and add sweat pants and socks, I thought I would never get warm. I thought sure I must have a fever but my temp was only 97. Has anyone experienced this or could this be a blood pressure issue? My bp was 104/67 this afternoon which is one of my lower readings but my pulse in still staying around 109. My temp has been 96 and 95 before so I don't know what to think.

Sue (Balto)
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Margo (---.212.intrex.net)
Date:   07-14-03 19:58

Trevor, Meg,

My daughter worked up to taking the Benicar at 40 mg, three times a day. She feels fine, no problems with blood pressure. In fact, she feels much better than she has in a long time. With the Benicar at this dose, she is able to tolerate 50 mg of minocin, the highest dosage yet, with only mild Herxheimer that day. (Previously, 30 mg of minocin was too much, and could make her feel ill for days. The Avapro she took for several months was helpful, but the Benicar is much, much more effective.

I hope the doctor will agree to prescribe it at the higher dose. (He had us gradually increase from 20 mg 3 times a day.) She sometimes developed a bad headache about six or seven hours after the previous dose of Benicar, so I imagine that having enough medication to sometimes space the dosing at every six hours would be desirable.

Now, we need significant decreases in eye inflammation so she can decrease the methotrexate. (And also, in anticipation of cataract surgery, she needs to have very little eye inflammation in order to anticipate success with the surgery.)

Margo
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   07-14-03 20:51

Sue,

One of the things that was hard for me to learn about is reflected light. I live in sunny Texas, so even if I shield the top of my body with an umbrella, I can become ill from standing on white (concrete) pavement or beside a white building because of the reflected light.

I don't know if that is what happened to you, but I can tell you that I've had many experiences where, a few hours after sunlight exposure, I was lying cold and shivering under blankets in bed. I used to get up in the night to take a steamy hot bath so I could get warm enough to sleep.

If you haven't had a blood test done to check your vitamin D metabolites, consider discussing these blood tests with your doctor, as well as angiotensin receptor blocking drugs (which will block the angiotensin II that seems to be the source of the thermostat problem) and minocycline.

Belinda
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Meg (---.188.239.198.euc.wi.charter.com)
Date:   07-14-03 21:47

Margo,

That is wonderful news. Your tenacity has paid off. And what a terrific example for everyone else. If an 11yr old can tolerate 40mg of Benicar every 8 hrs surely most adults can. I imagine she will feel even better with a complete blockade of q6h.

I hope the Minocin effects a decrease in the eye inflammation soon. It would be great to discontinue the MTX before she develops any side effects. You are wise to wait for the inflammation to subside to ensure the success of cataract removal.

Thanks for keeping us up-to-date. Your daughter's sarcoidosis is no match for a Mom like you!

Meg
 
 Re: *** ARB therapy - nuts and bolts ***
Author: bpeck (---.co.us.ibm.com)
Date:   07-15-03 07:06

Margo:
Before she has that cataract surgery - go back to the
eye problem and cataract section and read my post on n-acetyl carnosine
anti-oxidant eye drops and the papers on how they are an alternative to cataract surgery.

I realize it's a small Russian study - and I realize they may or may not work - but if there ar no adverse side effects I figure it's worth a whirl.
And I realize everyone makes their own choices - and just relaying what I'm doing.

Keeps us posted.
Barb
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Margo (---.212.intrex.net)
Date:   07-15-03 18:22

Barb,

I already bookmarked your post on the n-acetyl carnosine anti-oxidant eye drops. Since we're just back from a vacation, I haven't had time at the computer to check the studies. I sure would hate for her to have the lens removed and then find out there are alternatives.

I appreciate reading the research you have come up with.

Are you finding that increased inflammation in the eye is related to Herxheimer? We want to get rid of the bacteria without stimulating much eye inflammation. Any input would be appreciated, since it is pretty much guess work for us. (Maybe you should annswer this in the Eye problem and Cataract section, in order to keep the discussion in one place.)

Thanks.

Margo
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Donna (---.jan.bellsouth.net)
Date:   07-16-03 06:46

Trevor,

I have been monitoring my BP and is seems to be doing well. The lowest reading is 2 hrs later. BP starts going back up to regular level. Yesterday I took 2 5mg tablets and felt better. The painful symptoms decreased alot. Today I will take them 8 hrs apart. I'm hoping for good results.

My sinuses are acting up rather badly, can I take Benedryl with the Benicar?

Donna
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-16-03 07:53

Donna,
Benicar blockade will stabilize your sinuses, but at a higher dosage than you are taking. If you use Benedryl try not to use so much as will mask the changes you perceive from the Benicar kicking in. It is important to be able to recognize the symptoms which tell you the Benicar is working.

..Trevor..
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Meg (---.188.239.198.euc.wi.charter.com)
Date:   07-16-03 07:57

Donna,

Benadryl (diphenhydramine) may be purchased OTC. It should be okay to take to help relief allergy symptoms such as runny nose. But it will make nasal congestion worse as it tends to dry things up.

Meg
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Sue Sullivan (---.dsl.stlsmo.swbell.net)
Date:   07-16-03 09:11

I'm on my third day of 20mg of Benicar. I had a prickly skin sensation and joint pain all over my body and shakey legs last night. I was very fatigued all day yesterday. This morning I have cold sweats. My blood pressure is about the same as it was before the Benicar. Are these normal reactions to the Benicar? Would it be better to bump up to 40mg of Benicar now or wait until I have be on 20mg for a week as I had originally planned to do?

Anyone out there who has had the same reactions?

I am still on Prednisone (10mg and 9.5mg on alternating days. I'm also on Cefuroxime for an ear and throat infection.

Sue in St. Louis

Sue in St. Louis
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-16-03 11:32

Sue,
Wendy had trouble juggling her prednisone and Benicar. She found that taking the prednsione in 8 hourly portions, and the benicar in 8 hourly portions, and interleaving them (one tablet every 4 hours) seemed to be best. You may not have any real trouble, however. I would give it another day and check back in again.

10mg is still quite a lot of prednisone. Your body doesn't start making cortisone again until somehwere in the region of 5mg - 7.5 mg per day. Anyway, focus on getting the benicar in place and reevaluate your needs.

At least you know that Benicar makes a BIG difference in this disease... even if the difference has been negative, to this point...

..Trevor..
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Kevan Woodcock (---.pacificinsight.com)
Date:   07-16-03 13:12

Hi
Thanks for all you previous responses and support. I am on Avapro now, 150mg every 12 hours. Should i up the dose to every 8 hours? My blood pressure hasnt dropped and is normal. i had trouble with very low BP on the diovan and had to stop taking it. I feel very fatigued on this avapro and im just wishing that i didnt. Its enough to really effect my every day function and it makes me very forgetful. in fact i just read a bunch of posts i put in this thread and i have no recollection of posting them. I am tempted to stop the avapro and go with minocin alone as i felt great when just on minocin only, but bad on the ARBs. Ive only been on avapro for 2 weeks and i just read a post that stated that not enough ARB dosing is worse than none at all, causing a worsening of the sarc symptoms.
In general i am getting frustrated and I know I am a victim of my own impatience to get back to the good feeling i had on minocin only. What should i do?, stay with avapro for a bit longer (ive just added 50mg of minocin as well) or just stick with the minocin only.?
I would love your opinion and thoughts.

kind regards
kev
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-16-03 13:22

Yes, Kevan, unless you take the ARBs every 6-8 hours they can't do their job properly. i would try 150mg avapro every 8 hours for 3 days, and then drop back to Minocin alone (if the increased avapro didn't help you get over the fatigue).

Benicar really has a huge advantage over both Diovan and Avapro, and should always be the ARB you use unless it is not available in your country.

..Trevor..
Disclaimer: of course you should discuss any changes to your drug protocols with your Doc...
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Cheryl Engel (---.mpls.uswest.net)
Date:   07-16-03 13:40

I thought I read something on here about a shampoo for hair loss (thinning), I believe it was Nioxin, but I can't find the email. Do you know what I am talking about?
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-16-03 13:49

Cheryl,
It is mentioned in the "Sarcoid Symptoms" thread

There is a "Search" facility at the top left of this page to help you next time.

..Trevor..
ps: high levels of 1,25-D is the real cause of hair-loss for most sarc patients
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Kevan Woodcock (---.pacificinsight.com)
Date:   07-16-03 14:52

Thanks Trevor
I will talk with my doctor and then take avapro every 8rhs he is being very supportive of this treatment. I will get back to you in a few days with the results.

thanks again.

regards
kev
 
 Re: *** ARB therapy - nuts and bolts ***
Author: ~Tammy~ (---.cox-internet.com)
Date:   07-16-03 18:46

Hello,
I am still having what I call "DEEP" fatique. I've been on the regimen for about a month. Would increasing the Benicar 40mg q-6hrs help?
Thanks! Y'all have a great night!
~Tammy~
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-16-03 18:51

Tammy,
Fatigue is one of the most changeable symptoms (it comes and goes during a course of therapy), and one of the last to totally disappear.

Increasing the benicar or decreasing the minocycline (to give less herx) should both help relieve the symptoms

..Trevor..
 
 Re: *** ARB therapy - nuts and bolts ***
Author: ~Tammy~ (---.cox-internet.com)
Date:   07-16-03 18:56

Trevor,
Thanks for all your help tonight! You sure have been busy! Have a great one!
~Tammy~
 
 Re: *** ARB therapy - nuts and bolts ***
Author: bpeck (---.dialup.mindspring.com)
Date:   07-16-03 19:56

Margo:
I will andwer your questions on the eye and cataract thread.
Barb
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Meg (---.188.239.198.euc.wi.charter.com)
Date:   07-16-03 20:33

Sue, Kev and Tammy,

The first week I was on Benicar (40mg every 8hrs) I was very fatigued. I attributed this to the decreasing level of 1.25-D. Our brains have tried to adapt to the high level and it protests with the neurological-type symptoms you mentioned.

My experience with fatigue has been similar to Trevors. My energy level improved dramatically after that first week but the intense fatigue would come and go sporadically because of the Herxheimer reactions.

Meg
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Donna (---.jan.bellsouth.net)
Date:   07-17-03 09:18

Trevor,

I gave my doctor the information you suggested and I go to see him tomorrow (Friday). I have started taking the Benicar 5mg tablet every 8 hrs. I do see a change that lasts for about 4 hrs. Yesterday I had to go out during the day (just long enough to walk in & out of a store) and I parked close. I wore a long sleeved shirt and sunglasses, but last night about 12:30 am I started feeling very ill. My legs, ankles and feet are slightly swollen, extremely grumpy (badly so), tired, and last nights sleep - restless. Could these symptoms be from just the bit of sun I was out in yesterday? I know I still have so much to learn.

For fluid in the past I have taken Generic Triamterene/HCT37.5 (Dyazide Caps - dosage: 1 per day as needed). Can I still take this or does it need to be changed to something else?

The blood test results should be in tomorrow. I intend to ask my doctor for at least 20 mg Benicar. I don't know if he will give it to me every 8 hrs though. I will try to convince him.

Donna
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-17-03 09:30

Donna,
I personally don't believe in the HCT medications, as they affect your kidneys, which are usaully weak enough in a sarc patient. After you get stable on the benicar you may not need the HCT.

Yes, just 5 minutes of reflected sunlight is all you need to get ill. Or 5 minutes in front of an open window. It is amazing, but it goes away pretty quickly once you start the minocycline therapy (well, within a few months, anyway).

Print the new F.A.Q. out at the top of the page. It explains the issues with Benicar.

..Trevor..
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Mike (---.res.east.verizon.net)
Date:   07-21-03 07:37

Anybody have trouble with low sodium and high potassium levels?

I am on Minocin 200mg qod and Benicar 40mg q6-8h. They seem to be working wonders on my cough and skin lesions, but my minerals are out of whack. I typically eat a very high potassium diet (thought this was a good thing...)

We're checking blood every couple of weeks. Na is down to 128. K is up to 5.0. Last tests were two weeks ago when I was feeling pretty bad. Have tried to tweak both numbers with diet and definitely feel better with more sodium. Nausea that I was associating with herx seems to be gone -maybe just low Na all along?

White count is also down to 3.7. Not sure if/how this could be related.

Going in for more blood today, but if the sodium isn't better, doc is going to want to stop Benicar and see if my minerals normalize. Any advice?

--Mike
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-21-03 07:48

Yes, Mike, one comment,
To try and understand our bodies in terms of sodium and potassium is like trying to understand a car in terms of gas and oil. When the car isn't working, no amount of gas and oil is going to do the trick.

The things to watch are the D-metabolites, calcium, the lymphocytes, the CRP, the Triglycerides, the Alkaline Phosphatase (amongst a host of other inflammatory markers).

I am not saying that Sodium and Potassium are not important, they are, but when your car has got a loose timing belt, balancing the gas and oil will not help you fix the problem. You have Sarcoidosis, and the way your body works is a whole new ball game.

After a few months on Minocin/ARBs you will be getting back to the point where everything starts to normalize again.

..Trevor..
ps: Just lay off the sugars. Glycosylated proteins activate the immune system. Discover Splenda...
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Mike (---.res.east.verizon.net)
Date:   07-21-03 08:24

Thanks, Trevor.

So are this variation in 'lytes typical on our Benicar dosing? Doc just doesn't want me convulsing on her watch due to dosing she approved and I suppose she has a point.

I think she might feel better if I could tell her that my numbers are at least consistent with others on the therapy and I'm probably not on some downward sodium spiral...

--Mike
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-21-03 08:36

Mike,
When in doubt I refer to my own lab results -- hmmm 1 October 2002, about 45 days into Minocycline therapy:
Sodium 141 (135-148)
Potassium 4.9 (3.5-5.5)
which my doctor thought were unremarkable - they are not circled, and he did not discuss them with me.

Your RAS is being upset by both the inflammation and the ARB. In the absence of real increases in the more complex inflammatory markers I would suspect that trying to draw inferences from the electrolytes alone is not good science. You have Sarcoidosis, your body does not prcess Calcium the same way as healthy folks do. Why should it process the other electrolytes normally?

Let's see - WBC was 6.0 (4.1-11.3) but it had been as low as 3.2 in year 2000, when my disease was still out of control. Lymphocytes dropped as low as 9% (20-40)

..Trevor..
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Sue (---.ssa.gov)
Date:   07-21-03 12:17

Hi Trevor,

Hope I'm not being a pain here but the b/p is becoming a concern, I think the doc is going to take me off the Benicar if it continues. Over the weekend it was 89/54, this a.m. it was 99/52 , now its 94/58. STill have the lightheadedness and a headache. Should we try Diovan or Avapro instead?

Thanks.
Sue
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-21-03 12:28

Sue,
Please don't concentrate on your BP variations. Benicar is primarily affecting your sarcoid inflammation.

Didnt you start off with a very low 25-D (approx 7) and 1,25-D (approx 22)? If this was the case I would suspect that you should be focusing more on the way Benicar will be depressing your 1,25-D down below normal (below 13 pg/ml). You might now be hypo-D. Don't know. Measure it.

You should try to supplement the 25-D with ONE 66IU capsule of Vit D/Calcium (one Natures Life Softgel Code 557). Have you tried this to see if it gets rid of the lightheadedness? That worked wonders for me as I went into remission.

BPs in that range don't give me a problem, nor Meg, either.

..Trevor..
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Kevan Woodcock (---.pacificinsight.com)
Date:   07-21-03 12:37

Hi
Thanks for all your reply’s. I have just finished my 3 day trail of avapro as per Trevor’s advice(150mg 3x/day) and i felt terrible. Mostly fatigue and very bad shortness of breath. Prior to this 3 day test i have been on avapro for 2 weeks but only 150mg 2x/day. The fatigue and shortness of breath slowly built up during that period and then increased significantly when on 3x/day. My blood pressure stayed near normal. I experienced similar problems with Diovan which i was on for about 10 weeks or so. It doesnt seem that ARB is for me. Perhaps because i have a low D ratio to begin with?. I think i should come off avapro and just stay with the minocin only. I have always felt quite good just on the minocin only but bad when adding the ARBs. Anyway, my plan is to stop the arb and stick with antibiotics only. I will let you know how it goes. What do you think? am i trying to rush things? . i am just desperate to get back to the good feeling i had when on minocin only so i am unsure whether i am rushing the avapro based on my bad experience with diovan and my good experience with minocin only.

kind regards
kev
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-21-03 12:48

Kevan,
You and Caroline both started with low D Ratios and both had adverse reactions to the ARB blockade. Yes, by all means stay with the antibiotic, after all, it is the thing killing the bugs, benicar just facilitates a better tissue environment and gets rid of herx pains.

Have you ever been diagnosed with a fungal infection or treated with an anti-fungal or used methotrexate? (3 questions in one sentence). I have been trying to figure out why you and Caroline had so many problems, and one theory is undiagnosed, concurrent, fungal infection, possibly exacerbated by MTX. There is another study here

..Trevor..
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Sue (---.ssa.gov)
Date:   07-21-03 13:12

Yes, Trevor, I did start off low but the 25-D is now 9 and the 1,25-D is now 45. With that, I don't think I should start a supplement, right? So I'm still confused, sorry. I know the ARBs and Minocin can cause the Ds to fluctuate but now that its gone up, how does that relate to the bp/lightheadedness etc. If the dr. takes me off the Benicar, should I try another? She's having me chart the bp and if the bottom number stays below 65 she's taking me off.

Thanks for everything.

Sue
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-21-03 13:22

Sue,
Benicar can cut your 1,25-D in half, in just days. That is a big change. Try a supplement. Just one 66IU softgel (I gave you the part number, above). That's not a supplement. That's a "bolus". See what happens. Any adverse effects will pass pretty quickly.

Stop worrying about Doc's arbitrary 65 line. She is just trying to help you, Sue. You can figure this out, just don't panic or lose focus...

..Trevor..
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Kevan Woodcock (---.pacificinsight.com)
Date:   07-21-03 14:54

Hi
No is the answer to all 3 questions, no previous fungal infections that i am aware of any way, and ive never taken methotrexate. I will keep posting my progress, i hope to start feeling better in few days perhaps just like i did when i first started minocin, or at least after the initial herx settled. I will go get my refills of avapro on schedule and keep them for the future. You never know.
thanks again.

kind regards
kev
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Donna (---.jan.bellsouth.net)
Date:   07-24-03 05:37

I'm taking Benicar 10mg every 8hrs. It seems to be helping, but this Tuesday started out normal then late in the day I became very fatigued, muscles very sore & tired, it hurt to pick anything up. When I went to bed it even hurt to lie down. Developed a sore stomach and right cheek bone hurt. I'm not quite sure what to make of this day, maybe another D level change? I have not eaten anything with D in it that I know of (I checked the labels). Wednesday, I did not even hear my alarm clock, which was set very loud ran for 1 hr before I heard it (usually hear it within 10 min.). Also, I had a sinus headache, and itched on my face and hands, and thinking was rather slow.

Today my feet extremely painful. I have 2 nodules on my left foot. Will these go away during the treatmnet period or am I stuck with these nodules?

Tomorrow I see the doc and the Benicar dosage will get bumped up to 20 mg every 8 hrs. I would appreciate any suggestions.

Thank you,
Donna
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-24-03 06:16

Donna,
The magic number is 40mg every 6-8 hours.

Until you get to that point any changes you are feeling could be just coincidental. Maybe at 20mg q8h a greater sense of calm will kick in. Let's see.

The nodules will not get larger, provided you control the herx. They will shrink eventually. One month? Six months? It will depend on a stack of factors. But once you start on track to cure, the time it takes just doesn't seem to matter so much...

..Trevor..
ps: Note that we say 6 to 8 hours. Eight is a minimum for effectiveness.
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Donna (---.jan.bellsouth.net)
Date:   07-28-03 06:04

Trevor,

I have started the 20 mg tabs, Sat. took 2, 20mg tabs, felt very bad, muscles hurt and weak. My BP dropped alot with the starting of the 20 mg tab. (100/50 BP). Sun. - took 2, 20 mg tabs and a 10 mg tab, felt very tired. Today I have taken 1, 20mg so far. I had a very upset stomach - painful, when I got up this morning.

Sun. I was late taking my evening dose by 1 1/2 hrs and my stomach hurt real bad. Could there be a connection? I can deal with most everything else, but not stomach pain. Do you have any ideas that might eliminate this problem?

Sincerely,
Donna
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-28-03 06:14

Donna,
I can't recall whether your 1,25-D was high, if so, read the messages above about your body needing to adjust downwards.

The GI tract (commonly called stomach) includes your intestines. Microbes love to populate intestines. They are also full of muscles affected by 1,25-D. You may be stuck with stomach pain while you heal. Talk with Doc about a pain killer.

And if we have said it once we have said it a thousand times.
Either you take Benicar in equal doses every 6-8 hours or it does you no good at all. It actually makes your sarc symptoms worse. You can break up the tablets to even up the dose (as long as Doc is happy with that).

..Trevor..
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Sue (---.ssa.gov)
Date:   07-28-03 10:49

Hey Trevor,

I'm back with the bp question again, 106 over 49 and over the weekend the diastolic was as low as 36 which I thought may have been a fluke but now with it at 49 I just don't know. Can you tell me how low is too low?

Also wanted to tell you I went to JHopkins on Friday, was very surprised to hear the dr. say he was okay with the minocin. Only thing is he wants it increased to twice a day. He also wants me to try Plaquenil even though there is the risk of going blind from that drug. He's also concerned I may have the neuro as well and wants to perform an LP and if that is the case, then he would want me to go on a "massive" dose of steroids, as well as the Fosomax (sp?) for my bones. Needless to say, I'm sticking with "the plan." I'm actually beginning to feel almost normal, except for the pain, and my spine and neck have really been the worst this weekend. Does anyone else feel that soreness in the spine? I still have that mental fog and forgetfulness but its like I'm getting the old feeling back of being able to take on the world again, what a wonderful feeling. And I want to thank you again for what you are doing and for getting this website together. Many thanks, as well, to all who contribute.

Sue
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-28-03 11:24

Heck, Sue,
I don't think anyone knows what is "too low". But 36 sure sounds like you don't want to get much below that How are your symptoms? Do you think you would benefit from cutting back the benicar to 20mg every 8 hours?

Yes, Dr David Moller at Johns Hopkins has said that he thinks bacteria are behind sarcoidosis. I have written to him, and one of the other JH staff pulmonologists.

Sometimes I wonder how these folks ever learn anything - it sure seems to be the hard way. Anyway, neither of them wrote back, and they still keep giving their patients a minocycline dosage (q12h) which doesn't work very well in sarcoidosis.

Maybe they don't want the minocycline to work? Maybe they want to "prove" that antibiotics don't work in sarcodiosis? I just don't know with some of these folks.

Also, by giving Plaquenil and/or MTX and/or Prednisone at the same time as the minocycline they seem to want to be able to credit either pred or MTX or Plaquenil with the recovery, and not the minocycline. It sure seems illogical to me.

Fosamax is not tested in sarcoidosis. It affects all the hormones in a manner which is currently unknown and undefined. I would avoid it for those few months it will take to rid your body of this disease.

Have another talk with your PCP.

Keep smiling,
Trevor
ps: us pioneers are the ones with arrows in our backs

 
 Re: *** ARB therapy - nuts and bolts ***
Author: Sue (---.ssa.gov)
Date:   07-28-03 11:52

Trevor,

I cut the 20 mg. in half and am taking them every 6 hrs. since the doc had prescribed 20 mg every 8 hrs. and would not change that (and I'm still only taking 50 mg of Minocin). My head feels really funny sometimes, I don't know how to describe it, not the same feeling I get if I'm going to faint but almost like a pressure building with a tingling feeling. I have to say when I first cut the 20 mg in half, I was really stuffy but that has gotten better.

I saw Dr. Chen, he was listed with Dr. Moller on the bacteria study. I took all your material with me and the only one he bothered to look at before handing them back to me was the Angiotensin/Benicar issue. I was surprised as well. He said they really didn't track the ACE nor the Vitamin D although when I told him how sick I got from being in the sun, he said that "it might have something to do with it." Dr. Moller told another lady from my workplace that they hope to have a cure within 5 yrs. Of course, we don't know if that was before or after you wrote to him.

Sue
 
 Re: *** ARB therapy - nuts and bolts ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-28-03 14:21

Sue,
I think your problem may be with instability.

The thing that moves my BP even more than the benicar dose is the changing 1,25-D levels. That's why I suggest folks with low BP take the 66IU Vit D softgel, rather than change their Benicar dosage. I have a gut feeling that until your dosage gets to a control point, which I would expect is a MINIMUM of 20mg every 8 hours, that you are going to have instability.

I know it is counter-intuitive, but it does make perfect sense if you look at the ARB from its Blockade aspects, rather than its BP aspects. Read the material in the FAQ and look at that graph again, and see what I mean.

There is no way I could suggest that you take any risk to validate this, however, but at least if you develop an understanding maybe you can divide up the dose more evenly and frequently and gain a better measure of stability.

..Trevor..
 
 Re: Archive to 7/29/2003 -ARB therapy-nuts and bolts
Author: Donna (---.jan.bellsouth.net)
Date:   07-29-03 10:43

Trevor,

I have asked my husband and daughter help remind me about my dosage times. Yesterday and today my dosage times have been 8hrs apart. I'm feeling pretty good today, a little tired (couldn't sleep last night till late, 3am).

My doctor wants to check my potassium levels after I start the 40 mg dose. Is there anything else that should also be checked (maybe a general workup)?

Yesterday I had to register my children at school (I covered up). First one no problem. The second one (different school)....walked into building, it felt cool & good, no problem so far....went to get paperwork and started to sweat badly (running sweat), even soaked through clothes. I do not know what brought this on. After about 30 minutes it stopped just as mysteriously as it started. This one really has me puzzled.

I really appreciate your advice.

Sincerely,
Donna
 
 Re: Archive to 7/29/2003 -ARB therapy-nuts and bolts
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-29-03 10:55

Donna,
You are about to enter a period where you feel, at once, the most wierd symptoms and the most wonderful euphoria.

Our brains seem to get addicted to 1,25-D and react strangely while it is regulated downwards in our body, first by the ARB, then after the bugs are dead. In the middle you will have herxheimer surges further complicationg things.

The key is to keep that Angiotensin Blockade in place with the 8 hour dosing. If you keep the 1,25-D under control of the ARB it waxes and wanes in about a 4-6 hour interval, and you don't have all the nastiness build up over days or weeks.

The sweating will go with the Minocycline, probably in the first 3 months. I can't remember when mine went away. I just noticed one day that there hadn't been any for a while.

Eye sensitivity seems to take longer to go. 3-6 months is my experience. But it does go, in stages, leaving you less sensitive to sunlight after each change.

Just don't forget any ARB doses - it takes 24-48 hours to get back to 'normal' again.

..Trevor..
 
 Re: Archive to 7/29/2003 -ARB therapy-nuts and bolts
Author: Kevan Woodcock (---.pacificinsight.com)
Date:   07-30-03 08:51

Hi Trevor.
I came of the Avapro and after 24hrs i was able to go out for a run, whilst on the avapro i was mostly bed or sofa bound. Anyway, my energy has increased but i still have significant fatigue. Presently i am taking only 50mg of minocin every other. One symptom is of concern and thats my chest. its very tight, wheezing and full of fluid with a wet chesty cough. This has got worse since stopping the avapro and i have had to stop running again as its too difficult to breath. (i use running/walking to gage how i am feeling). My concern is that I havent had these chest symptoms this bad for 2 years. 2 years ago my doc said my pulmonary functions were bad and he put me on steroids. Certainly my pulmonary improved after that but it was a terrible time on the steroids. Im just concerned that things are getting worse again. What do you think of the wet chesty cough and tight chest. Is it possibly just herx?
Also, perhaps i should stay off the avapro for 2 months and then perhaps go back on it but at half a tablet every 8 hrs.? what do you think?
However, apart from the worsening chest symptoms, I am generally feeling better off the arb than on.

One more thing which may be just nothing. I have been having crazy dreams that are so real. I am able to carry on full conversations with my wife whilst feeling fully awake but still seeing the characters/images of my dreams in the room also. I fully remember them and I don’t actually notice the transition from sleep to awake. In other words the characters just slowly disappear and then I just accept that it was a dream. But it’s a slow process!!!! Crazy!

Thank you again.

Kind regards
kev
 
 Re: Archive to 7/29/2003 -ARB therapy-nuts and bolts
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-30-03 09:06

Kevan,
There are 2 patients who have had a bad experience with ARBs. Both started with low values of 1,25-D.

Crazy dreams are typically associated with high levels of 1,25-D, but that is high PARACRINE levels - high within the affected tissue. They may not be high in the blood stream if some other disease process is depressing them systemically.

ARBs suppress your immune system's Th1 response, and this would allow an undiagnosed disease process due to a Th2 response to become dominant. Fungal and Viral infections are usually Th2 processes.

I strongly suggest you see Doc and ask him to look into the possibility of fungal or viral infections as well as your sarcoidosis. I am not comfortable that your low D-Ratio indicates that your primary problems are bacterial.

The symptoms you are describing are worse than I would expect. In particular, Sarcoidosis produces a characteristic dry cough, not a "wet chesty" cough.

I suggest talking with Doc ASAP.

Sincerely,
Trevor
ps: Doc should feel free to call me
 
 Re: Archive to 7/29/2003 -ARB therapy-nuts and bolts
Author: bpeck (---.dialup.mindspring.com)
Date:   07-30-03 20:47

Kevin:
My experience may or may not be related to yours regarding nightmares.

Were you an easy dreamer before the Minocycline?

I've always had vivid realistic dreams - but not many nightmares as an adult.

While I was on Doxycycline (for Lyme), and after I'd been on it for about 3 weeks , I experienced exremely vivid nightmares increasing in intensity and frequency . I should say that I also had some GOOD dreams during this period - but the nightmares far outweighed the good ones.
The dreams also faded slowly after my husband would wake me - or I thought I was awake- sometimes I could tell either - they were more like nghttime hallucinations.

They stopped when I stopped Doxy.

I was on DOxy for 21 days as a second round around 2 months later, and the nightmares started again after a week. They stopped again when I stopped Doxy.

My Doxy dose was maxiumum for my body weight (300mg/day)
and I had ALOT of problems (herx & flash-back Lyme symptoms) - the nightmares were just one thing.

I am still unsure if this was a drug side effect - or a neuro "herx".
I have spoken to other Lymies that have had increased nightmares while on antibiotics and they were also unsure about the mechanism behind them.

Barb
 
 Re: Archive to 7/29/2003 -ARB therapy-nuts and bolts
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-31-03 05:20

Barb,
The dreams are associated with high (and fluctuating) levels of 1,25-D (and its associated Angiotensin II).


These can be due to a day of sunbathing or a dose of Herxheimer

Herxheimer increases the 1,25-D in your tissues and thus profoundly affects many, many, parts of your body (see the drawing in the Calcium and Vit D tuorial for just some of them).

So I would expect your dreams to have come and gone with your Doxycycline, Barb. And the dreams of the other Lymies...

We just have to get people measuring this hormone. Once you have a CWD infection your life tends to get ruled by these nasty critters, and the consequent disruption of your D metabolism. Please spread around the Vit D and Calcium Tutorial among your friends, and urge them to have their D metabolites measured to make sure they are not ruling their lives...

..Trevor..

>>> There is a new thread called "ARB Therapy - NUTS and Bolts <<<
>>> Please use that one, this thread is getting far to big <<<
 
 Re: Archive to 7/29/2003 -ARB therapy-nuts and bolts
Author: Kevan Woodcock (---.pacificinsight.com)
Date:   07-31-03 08:50

Thanks Trevor, I will talk to my doc about possible other causes as well as my sarc. I do get a lot of post nasal drip, I always have, I might just be bringing that up as well as having a tight chest. I do not have that typical dry sarc cough, I have had that before and im familiar with it and this is not it. Its tight chest and wet, but possibly only wet from post nasal drip but it feels like its wet deeper in the chest. I will speak to doc.

Barb…I always did dream quite a lot and I did go through a phase of the nightmare hallucinations a few years ago before I know that I had sarc. I have not noticed any increase in dreams since starting the antibiotics last February. This recent one was a good one though and I thought I would just throw it in as an F.Y.I.

Before I got really bad with sarc about 3 years ago I used to do a lot of outdoors stuff. I was once tested for gardia after being lost in the mountains for a while but the results came back clear. I never drank from streams but I did filter stream water on many occasions with a proper water filter. I guess its always possible that I have picked something up from that, or a tick.
I will speak with the doc soon.

Also another F.Y.I. after reading some of the sarc symptoms. I do take pain killers every night for back and ankle pain. I cannot sleep with out them. I also when having a bad sarc time definitely cannot form my words, I cannot think clearly and even if I know the word I want I just cannot say it. I mumble and often give up on speaking feeling frustrated and irritable. I understand that this is mostly due to a d125 surge. When my symptoms clear they do so fast. I notice a dramatic improvement in about 4 hour intervals. So much so that I can be quite ill in the morning and by night fall want to stay up late chatting and walking the dog, I can feel great. Unfortunate I haven’t had those good days for a long time but things are improving slowly over last years hell.

kev
 
 Re: Archive to 7/29/2003 -ARB therapy-nuts and bolts
Author: Reidar Jönsson (---.swipnet.se)
Date:   11-03-03 03:55

Dear Dr. Trevor,
since I wrote last I have found - actually a friend who is a Professor Ermeritus, MD Ulf Lindblom, who is a world leading expert in pain-management, (retired). He has helped me a lot even though he is not familiar with Sarcoidosis. He described Diovan, and I didn't have any problems at all with starting on 80 mg. since mid July. I felt better at once. My pain in my feet has subsided slowly and over all my head is clearer, even though I some times have to sleep more than normal. I have two question now:

First, Lindblom finaly found a hospital who actually messure Hydroxi-vitamin D, 25-,S I did the test in mid September, two months after the start of Diovan. My level is 73 in a range of 25 - 125. That is all it says. But I red that there whas some ratio ... well, Lindblom and I simply don't understand how to read the number here more than it is in the mittle.

Second, my pain in my feet has subsided, but as I understand it I should try the Minocycline treatment. The problem Lindblom have here is that he can't find it in his books. Is there another word/name for it in Europe?

Regards from Sweden!
Reidar Jönsson
 
 Re: Archive to 7/29/2003 -ARB therapy-nuts and bolts
Author: Admin (---.vnnyca.adelphia.net)
Date:   11-03-03 04:30

Reidar,
Diovan works well - but a dosing of 240mg per day (80mg every 8 hours) is best. Click here for an old paper we wrote about Diovan in 2001.

Vitamin 25-D is the inactive metabolite which is intermediate between the cholecalciferol in food and the active hormone 1,25-D. You divide the 73 nmol/L by 2.5 to get the ng/ml value you will find in our papers. This gives 29.2 ng/ml which shows you are actually ingesting quite a lot of Vitamin D, or maybe were taking a supplement or a multi-vitamin recently? I would expect a value closer to 37.5 nmol/L (=15 ng/ml) in a sarcoidosis patient.

Minocycline Hydrochloride is a member of the tetracycline family of antibiotics. It is very common. But none of the other members of the tetracycline family work in sarcoidosis, so make sure you get the minocycline. Here is a link to one of the US brands of this antibiotic. The formula and molecular weight are on that page, so you should be able to track it down.

..Trevor..
ps: I was standing on the square of Old Town in Stockholm in the summer of 1986 when the concept suddenly hit me that sunlight/vit-D was important in Sarcoidosis, and that sarcoid patients behaved differently to it than healthy folks. So Sweden is a key factor in all the subsequent discoveries...
 
 Re: Archive to 7/29/2003 -ARB therapy-nuts and bolts
Author: Reidar Jönsson (---.swipnet.se)
Date:   11-03-03 19:47

Dr. Trevor!
Thank you! I started the Diovan treatment in mid July and messured my blod mid September: that gives me two months worth of Diovan treatment on 80mg a day. I don't quite understand that you say that a sarc. patient would have values closer to 37.5 nmol/L than my 29.2 since you at the same time ask if I have taken supplement or a multi vitamin recently.

No, I don't eat any supplement, no, I don't take any vitamins. The Diovan helped a lot but I might be experiencing a placebo effect ... if my value shows that I am not close to the range where one should suspect sarcoidos? What I am trying to say is that I don't quite understand your answer? What is the value for a normal level?

Thanks!

Reidar
 
 Re: Archive to 7/29/2003 -ARB therapy-nuts and bolts
Author: Admin (---.vnnyca.adelphia.net)
Date:   11-04-03 01:21

Reidar,
73nmol/L = 29.2 ng/ml

There is no way that you can confirm sarcoid inflammation based on measuredments of 25-D. You need both D-metabolites, 25-D and 1,25-D.

..Trevor..
 
 Re: Archive to 7/29/2003 -ARB therapy-nuts and bolts
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   11-07-03 15:33

Reidar,

You said your serum 25-D reading was 73 nmol/L, which converts to 29.2 ng/ml. Trevor was explaining that your reading seems high, compared to what he usually encounters among sarcoidosis patients, which is usually about 37.5 nmol/L, equal to 15 ng/ml. The best way to get an assessment, though, is to get both your serum 25-hydroxyvitamin D and 1,25-dihydroxyvitamin D tested as described in this tutorial.

The abnormal vitamin D metabolism exhibited by sarcoidosis patients is fairly easy to understand if you read Trevor's review.

The sarcoid patient's activated macrophages energetically convert 25-hydroxyvitamin D to hormone D, 1,25-dihydroxyvitamin D. Due to the fact that we now have widespread supplementation of foods with 25-D, sarcoidosis patients can encounter problems from that supplementary source of 25-D. That is also why you were asked about vitamins. You might check your weekly menu against the foods listed in the discussion on Vitamin D levels in food. If you can reduce the vitamin D you are taking in by mouth, you are likely to experience additional relief.

Belinda
 
 Re: ** ARB therapy-nuts and bolts
Author: Karen S (---.brsr6.xdsl.nauticom.net)
Date:   02-02-04 07:26

Hi Trevor,
I have been on 40 mg of Benicar every twelve hours for almost a week. I feel really good and wonder if I should go now to get my D's tested -and a chest x-ray- or should I wait awhile longer? Should I start taking it every eight hours for a couple of weeks before the testing? How long does it take to reduce the D levels? I would like to start Minocin therapy but my doctor wants to see how the Benicar works first.

The next time I see her, I want to prove that the ARB works so that she won't question or put-off starting the antibiotic regimen.

Will I need to be on ARB therapy for the rest of my life? And if so, what dosage will be required to keep the inflammation down?

Karen S.
 
 Re: Archive to 7/29/2003 -ARB therapy-nuts and bolts
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-02-04 07:37

Karen,
As your herx drops, your need for ARBs reduces, and the required dosage drops. Whether you will want to gain benefit from using ARBs after remission/cure is going to be a personal decision. I am sure that the genetic susceptibility involves a disorded Vitamin D metabolism, which Benicar helps correct. It all depends on how addicted you become to the quality of life the ARB allows - and if any long term hazards are found in the use of ARBs.

At this point they are regarded as some of the safest drugs in the formulary, safer than Aspirin...

Benicar every 8 hours will provide you with even better blockade than you are getting every 12 hours. And, for emergency use, ask Doc if you can occasionally drop the dosage to 4 hourly intervals. You won't ever need anything beyond that.

Your Vit D testing will be distorted by the Benicar. It typically cuts your level of 1,25-D in half. Doc should be able to confirm that in the 'before and after' tests.

..Trevor..
ps:Please don't post into these "archive" threads...
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This is an archive site, membership and posting are no longer allowed.

Historical perspective on Sarcoidosis:


  1. The John's Hopkins Vasculitis Center: Prednisone Side Effects (incl. PHOTOS and PHOTOGRAPHS)
  2. Steroid-Treated patients Have higher risk of Cardiac problems
  3. "Evidence Growing That Inhaled Steroids, Like Steroid Pills, Can Cause Bone Loss"
  4. "Corticosteroids contribute to the prolongation of the disease by delaying resolution"
  5. "No data to suggest that corticosteroid therapy alters long-term disease progression"
  6. Cochrane Review - "Oral and Inhaled Corticosteroids have no discernible effect on lung function"
  7. Prednisone Improves Symptoms but not Lung Function in Sarcodiosis
  8. There is no conclusive evidence that corticosteroids affect the development of irreversible pulmonary damage
  9. Clinical Guideline For Treatment Of Arthritis Pain
  10. Angiotensin II receptor on BALF macrophages from Japanese patients with active sarcoidosis

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