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-site, or the Autoimmunity Research Foundation.
 
This archive of the historic study is maintained by volunteers from the Foundation. The material here provides useful background, but much of it is now out-of-date.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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 Inhaled Steroids and Sarc
Author: Free Polazzo (---.atl.client2.attbi.com)
Date:   01-02-03 19:36

Hi Everyone,
I have sarcoidosis (stage 4) in my lungs. For 7 years, I have been using Ventolin 220 -2 puffs in the AM and 2 puffs in the PM.

When I had my PFT, the results did improve when I took two puffs.

I was told that inhaled steriods are not that big a deal and that there are not side effects from the inhaled type. Can those who also use (used) inhaled steroids tell me of their experience? Do I really have to do this for the rest of my life? (I'm 58)

Great to have this group to talk about this.

Thanks, Free
PS: I just got off the "pill" (5 mg prednisone) after 7 years, 4 months ago.
 
 Re: Inhaled Streroids and Sarc
Author: Meg (---.188.228.34.euc.wi.charter.com)
Date:   01-03-03 07:09

Hello Free,

Your question intrigued me so I typed 'inhaled steroids' into the search function of this site and found several threads mentioning them. Below is a quote from Trevor on one of those threads that seems to apply to your question.

"There are a number of links at the bottom of this page to recent scientific papers about the use and (in)effectiveness of corticosteroids to 'treat' sarcoidosis. I would draw your attention to the Cochrane Review which concluded that inhaled steroids had little or no effect on the prognosis for sarc patients. They apparently do help if you have airway restriction. You may wish to discuss this article with your doctor."


Meg
 
 Re: Inhaled Streroids and Sarc
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-03-03 07:45

Free,
The relief that you get from a Prednisone inhaler is not due to any change in lung effectiveness (as the Cochrane review explains) but due to the action of the steroid on the airways and on the muscles in the chest and throat. These muscles are well perfused with blood, and the steroid is passed straight through into the bloodstream.

Nobody has been able to prove that inhaled steroids are any less dangerous to your chest muscles and structure than prednisone tablets, and there is one case reported of Avascular Necrosis (failure in the femur/hip joint) caused by too much steroid cream applied to the face.

..Trevor..
 
 Re: Inhaled Streroids and Sarc
Author: Kathleen (65.121.96.---)
Date:   01-03-03 16:32

Trevor -

Interesting - the specialists seem to think inhalers are an undangerous type of treatment - I was given steroid inhalers - even though I showed zero improvement on my PFT's; and my methylcholine challenge was negative (although the Cardiologist called it positive; they gave me steroids "in case I went either way").

Needless to say, I do not use them - we take enough meds without taking something that does nothing!!

Kathy in Wyoming
 
 Re: Inhaled Steroids and Sarc
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-03-03 18:00

Kathy,
The issue of risk all depends on which doctors you are talking to, and whether they have already classified you as a 'terminal' patient and are only looking to 'prolong life', not to 'cure' you.

Unfortunately, IMO, most pulmonologists tend to think that their Sarcoidosis patients should be happy for every day that dawns on them, for the end is surely coming

So, the studies that are performed by pulmonologists seem to gloss over severe side effects of, for example, steroids, and also pay no attention whatsoever to whether the patient 'feels better' or not.

A good example are the recent studies on Thalidomide as a possible treatment for skin sarc. Several of the most notable sarc experts in the USA produced a report saying "The drug was well tolerated and may be a useful alternative to systemic corticosteroids" (full text) while another group of doctors testing Thalidomide for 'Age related Macular Degeneration' halted their study early because they judged the same side effects to be too damaging for their patients (Chet Scerra, Ophthalmology Times, October 15 2001) (see these course notes). The side effects noted were "drowsiness, dizzyness, shortness of breath and irreversible peripheral neuritis (numbness)".

The FDA prescribing instructions for Thalidomide say "Thalidomide is known to cause nerve damage that may be permanent", yet when Drs Baughman, Judson, Teirstein, Moller, and Lower wrote up their study they chose to downplay the 50% incidence rate of this most crippling side-effect by saying "The complaint of numbness was subjective and may have been overreported".

So you need to be awfully careful that your perception of acceptable risk is similar to your physician's

..Trevor..
ps: It is interesting to note that Oncologists also are promoting Thalidomide, despite the risks
 
 Re: Inhaled Steroids and Sarc
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   01-03-03 18:23

Free,

Inhaled cortocosteroids are not free from side effects. Look at this list of side effects. Here is a quote from the article: "Inhaled corticosteroids are increasingly being used for the first line management of asthma. Adverse effects such as adrenal suppression and osteoporosis are well documented. Less well recognised adverse effects include glaucoma, skin fragility, acne vulgaris and hirsutism. Be aware of the cumulative effect if co-prescribing various dose forms of corticosteroids such as inhaled, intranasal, oral and topical preparations." Cataracts have also been reported with inhaled corticosteroids.

While there may be short-term benefits, what do we know about the long-term effect on sarcoidosis and potential long-term side effects? This 2002 review of literature concerning the use of corticosteroids in pulmonary sarcoidosis, concluded, "Oral corticosteroids improved results on the chest radiograph following 6 to 24 months of treatment and produced a small improvement in vital capacity and diffusing capacity. Trials of inhaled corticosteroids were small and results too inconsistent to make firm conclusions concerning their efficacy. There are no data to suggest that corticosteroid therapy alters long-term disease progression."

This 1998 study concluded, "At present it has not been clarified as whether there is a place for inhaled corticosteroids in the treatment of pulmonary sarcoidosis. Until convincing evidence in favour of inhaled corticosteroids has been presented, these drugs should not be recommended as a routine treatment for pulmonary sarcoidosis."

Belinda

PS As usual, position your mouse on any words in bold type, then click to see more information.

 
 Re: Inhaled Steroids and Sarc
Author: Free Polazzo (---.atl.client2.attbi.com)
Date:   01-13-03 17:35

Thank you Belinda, Kathleen, Trevor and Meg,

I have read the documents you refered me to and that helped me to decide to wean myself off of my inhaled steriods. (Flovent 220). I am now taking half of what was prescribed, so I do a puff in the AM and one in the PM.

When I see my pulmonalogist, I will tell him I will be going off all the inhalers after our meeting.

I have some cough, but nothing too tough to deal with.

My voice has gotten rougher. People ask if I have a cold. I also feel depressed for the last 2 weeks. Could they be from my dropping the prednisone 3 months ago and then the reduction in the inhalers?

Thanks,

Free
 
 Re: Inhaled Steroids and Sarc
Author: Terri (---.proxy.aol.com)
Date:   01-24-03 15:47

I have had asthma my entire life and was diagnosed with Sarc in Nov. 2002. I've been on Pulmocort for months--two inhales, twice a day, plus Serevent. Should I use something else to control my asthma? I'm quickly learning that cortocosteriods aren't good.
 
 Re: Inhaled Steroids and Sarc
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-24-03 15:50

Terri,
Can you describe your asthma for us? Is is a constant wheezing? Is it triggered by allergens? Is it triggered by emotions (eg fright)?

..Trevor..
 
 Re: Inhaled Steroids and Sarc
Author: Terri (---.proxy.aol.com)
Date:   01-25-03 14:24

My asthma is triggered by allergens, strenuous excercise and smoke. I've always had it. I used to seriously wheeze as a kid, before I was diagnosed with asthma and put on meds. Not I'm able to control my asthma and have serious episodes very rarely. When my asthma acts up now it's typically mild tightness and shortness of breath, usually brought on by excercise. I recently had a bad episode when I was around a dog and that made my chest tight, breath short, I wheezed and my albuterol didn't clear it up as quick as usual, not until I left the house and used my inhaler again did I get better.

I was diagnosed with Sarc in Nov. 2002 after I went to the doc because of an enlarged lump under the skin on the interior of my arm, opposite of the elbow. X-Rays then showed enlarged lymph nodes around my windpipe and the top of my lungs. A lymph node biopsy found granulomas.

SO far my asthma has been okay, although my doc upped my taking Pulmicort from once a day to twice because I was struggling more. Now it's doing better.

I go to see my Pulmonolgist on Monday and I want to talk to him about the ARB/antiobiotic therapy and also about my asthma. I do NOT want to go on Prednisone. I understand I need to request the serum 1.25 Dihydroxyvitamin D and serum Hydroxyvitamin D tests as well as having my ACE level retested. Originally only my ACE level was tested and that was normal.

What then? Do I ask for an ARB prescription, preferably Benicar and then an antibiotic like Minocin, Biaxin or Bactrim? I should mention I have an EXTREME allergy to Penicillin, in case any of these are related. Do I also ask him to prescribe something non-steroid for my asthma?

Thank you for your help, Terri
 
 Re: Inhaled Steroids and Sarc
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-25-03 17:10

Terri,
The problem with dealing with concurrent asthma and sarcoidosis is that one may be a manifestation of the other. For example, some folks with Sarc experience difficulty breathing, and have severe constriction of the muscles in their throats and bronchii.

But this can be due to a high level of the 1,25-D hormone acting on the chest muscles, or it might be due to asthma. Usually it is the former, unless the asthma is "sudden onset" in nature. But look, in any case, the best way to assess both your sarc and your breathing problems is to get your D metabolites tested.

You will need that done, in any case, before starting antibiotics, as two folks that had "tight throats" and breathing problems, both needed oxygen when the herxheimer shock hit them while the microbes were being killed off. When Doc gets the values of 1,25-D and 25-D for you, the whole thing will hopefully become a lot clearer.

I wouldn't change any medication until then - give Doc a phone call for the blood work - maybe you don't need another appointment and he will write it up for the nurse to take (heck, I am an eternal optimist )

..Trevor..
 
 Re: Inhaled Steroids and Sarc
Author: Terri (---.proxy.aol.com)
Date:   01-26-03 07:41

Thank you, Trevor. I will get my D-metabolites tested and start from there.

Terri
 
 Re: Inhaled Steroids and Sarc
Author: Kimmie (---.newhvn01.in.comcast.net)
Date:   01-25-05 18:34

I have a question: Has anyone ever been treated with a medication other than Prednisone for their Pulmonary Sarc? I have had it since 1990 and have come in and out of remission. I have begun coughing and feel like I am coming out again ( tightness in the chest, etc). I do not want to be placed on this steroid again EVER if there are alternatives. Any help would be appreciated. Thanks, Kimmie
 
 NO MORE PREDNISONE!!!
Author: Kimmie (---.newhvn01.in.comcast.net)
Date:   01-25-05 18:44

I am glad that I found this site!!! I have had Sarc since 1990. I have been in and out of remission so I know when the disease is flaring up again. I have recently ( since about 2 weeks ago) gotten the signature "cough" so I know that I am actually coming out of remission again. I have always been given Prednisone at very high doses and for very long times. I came out of remission about 3 years ago and I contracted every single side effect that is possible with this medication. Has anyone ever been treated with an alternative medication that has proven effective? I DO NOT EVER WANT TO TAKE PREDNISONE IF I CAN GET AROUND IT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

KIMMIE
 
 Re: Inhaled Steroids and Sarc
Author: Lottie (---.proxy.aol.com)
Date:   01-25-05 19:30

Kimmie,

Welcome to SarcInfo.

You're in the right place. We now know that Sarcoidosis is caused by bacteria which have learned to hide from and in the immune system. The Marshall Protocol (MP) will help your body to kill the bacteria.

The very first thing you want to do is to eliminate the vitamin D from your diet, and any supplements. The foods include but are not limited to fortified dairy products, eggs, fish, and fish oil. Please check labels for foods that have foods with naturally occurring in them, or have Vitamin D added to them.

You will also want to avoid sunlight. I will send you instructions to help you with that.

Also, read everything you can on this site and our sister site, Marshall Protocol.comYou should start with the articles in the upper left hand box of patient tutorials.

Feel free to ask questions about anything you don't understand. All posts go to the moderators, so that you don't need to repeat the quesions.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: Inhaled Steroids and Sarc
Author: Joe (---.proxy.aol.com)
Date:   02-19-05 21:59

I have had sarcoidosis for over 10 years. After having unsucessfully been treated with high doses of prednisone, I was fortunate to come across pulmicort budesonide (5 puffsaday, 3 in the A.M., 2 in the P.M). I live a fairly normal life .
 
 Re: Inhaled Steroids and Sarc
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   02-19-05 22:15

Hi Joe,

Have you read our brochure at the top of the page? It details the largest ever study of sarcoidosis in this country. This multi-million dollar ACCESS study demonstrated that sarcoidosis does not go away with or without prednisone treatment.

If you still need a steroid inhaler to lead a "fairly normal life", then your sarcoidosis is still very active.

You can recover and get rid of your symptoms with the Marshall Protocol. Let us know if you have any questions about recovering from sarcoidosis with the MP that are not answered by the patient tutorials, links, papers for physicians or threads on this site. You can also find easy to understand explanations and support on our sister website, marshallprotocol.com.

Best,

Meg
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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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