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 The material here provides useful background, but most of this site is now out-of-date.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? 

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 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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 Medication costs and purchasing strategies
Author: Meg (---.187.82.79.eau.wi.charter.com)
Date:   05-15-04 13:17

Some of you must purchase your medications 'out-of pocket' because you don't have medication insurance coverage. Others must import Benicar online and pay these costs themselves. Still others have difficulty with their insurance company not wanting to pay for the increased dosage of Benicar. This thread is the place to discuss these issues and share strategies that have worked for you.

 
 Re: Medication costs and purchasing strategies
Author: Meg (---.187.82.79.eau.wi.charter.com)
Date:   05-15-04 13:21

Meg's note: This email was sent to me and inspired the start of a new thread.

I imagine I am not the only one who has to pay for my drugs out of pocket, (insurance deductible is $2500). If you think others might benefit by sharing this, feel free to post it on the website.

Initially, I thought I should just pay out of pocket for my drugs, until I met my deductible, then I would submit them all at that time. I am estimating my MP drugs will not exceed $2500 this year, so unless I had some other unexpected expenses this year, this seemed to be a logical plan. Then I found out Walmart’s pharmacy will sell me the same drugs at a substantial discount if I let the insurance system run it through their mill. So I started giving them my insurance info before ordering the drugs, even though payment comes directly from me when I purchase drugs (since I am under the deductible.)

I called Walmart Pharmacy this week to find out the cash price for different quantities of Mino and Zithromax. I determined the economical order quantity was 30, Z and 100, Mino. I called my Doctor’s office to request they call in those amounts for my new prescription. (I estimated these quantities might come close to what I need for the MP if I can finish in 9-12 months) When I picked up this order, the insurance company, of course, reduced the allowable quantities to a 21 day and 30 day supply, and the resulting price per dose was higher than the cash price I was initially quoted over the phone, for the quantities I wanted.

Surprisingly, after reasoning with the Pharmacist on duty, she agreed to sell directly (not involving the insurance company) the quantities I requested, but at the insurance discount rate. This way, I am getting what seems like the best possible price without involving my insurance company unnecessarily. I will just plan on submitting all the expenses at the end of the year if I reach my deductible.

It bothers me to think about what the insurance company will do with the drug expense info they are collecting even though it is not coming out of their pockets. Maybe they won’t find out about this expense if I don’t report it, then use the info to justify dropping me or raising my rates.
So, for others with high deductible plans, perhaps they can save in two ways by using this approach. One, lowest possible prescription outlay, and two, avoiding rate increases. For the uninsured……..take this info to the pharmacists and negotiate the best possible pricing. How can it be fair to charge a lower rate to
someone with insurance, then inflate the price for the poor guy who can’t afford insurance to begin with? Yes, the insurance companies use their leverage to lower prices, but consumers need to take advantage of that leverage and insist on equal pricing and reap the benefit as well.

Walmart seems to be very competitive pricing our drugs, but we have to pay attention and may have to challenge them to be sure we are getting the best price. Perhaps we should have a string for comparing drug prices and sources? The best way to negotiate is to be informed.

I get a 90 x 40mg Benicar prescription for $1.31 each, with insurance discount. This seems to be the best quantity price anyway, so I haven’t bugged them about limiting me to one month at a time. But the next time, I will negotiate for the same price, but direct instead of through the insurance company.

Z 250 mg x 30 is $7.00 each (yikes! Glad we don’t have to take 3 of those every day!) and Minocycline 100 mg x 60 is $.96 each.

Costco pharmacy may be competitive too, but I never did find out how much better pricing would be with the insurance discount, and Costco is not convenient for me. Local pharmacies may be willing to compete if we present price information from the competition.

John Dresser

Addendum: Trevor writes that drugstore.com sells 30 minocycline 100mg for $20

 
 Re: Medication costs and purchasing strategies
Author: Stan (---.dyn.optonline.net)
Date:   05-15-04 14:24

whats the difference between minocin and minocycline hci

 
 Re: Medication costs and purchasing strategies
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-15-04 14:30

Stan,
Minocin and Dynacin are the "brand names". Minocycline HCl is the generic. There is no real difference between them when using our protocol (except about $2 a capsule )

Ranbaxy (manufacturer) (made in India or Ukraine) is the cheapest minocycline HCL generic approved in the USA, and it comes in 50mg, 75mg and 100mg capsules. Drugstore.com seems the best source.

..Trevor..

 
 Re: Medication costs and purchasing strategies
Author: Stan (---.dyn.optonline.net)
Date:   05-15-04 14:47

thanx

 
 Re: Medication costs and purchasing strategies
Author: Susan Friedl (---.sonic.net)
Date:   05-15-04 20:50

I haven't had to purchase the Benicar yet, but I have been on some expensive drug protocols with a high deductible insurance policy.

I find it is worthwhile to check the difference between Costco and drugstore.com. Sometimes one is cheaper, sometimes the other is. Sometimes the difference can be substantial.

An issue with ordering drugs through the mail in the summer is whether your meds are heat sensitive. Sitting in the hot mail truck or an exposed mailbox can be hard on some drugs.

Susan

 
 Re: Medication costs and purchasing strategies
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-15-04 21:18

Suasn,
A good point.
Unfortunately the medications are also freighted by some of the pharmacies without due care, so we need to be alert to new batches which just don't work right.

When I was on Diovan capsules I would frequently get a batch which just didn't work as well as the others. I still have many of these faulty batches in storage. I was always intrigued by precisely what parameter had changed to render them ineffective. I guess, one day, I will be able to analyse them and find out.

..trevor..

 
 Re: Medication costs and purchasing strategies
Author: Meg (---.187.82.79.eau.wi.charter.com)
Date:   05-15-04 21:36

Susan,

I believe that, for an extra fee, medications will be shipped with a coolant. Or you can have them shipped overnight. This precaution might be worth the extra expense in the summer.

Meg

 
 Re: Medication costs and purchasing strategies
Author: Serena Fulton (---.proxy.aol.com)
Date:   05-15-04 22:08

I do not have any insurance. I have had to do alot of research also to get my meds. Drugstore.com is the best place to get Benicar 90 tablets @ 40mg for about $120.00. At CVS it was $200.00. Minicycline also is cheaper there. They are very easy to work with getting your meds when you need them.

Serena F.


PS Anyone that has to have meds refrigerated drugstore.com also takes great precaution in keeping them cool & to you promptly.

 
 Re: Medication costs and purchasing strategies
Author: Meg (---.187.82.79.eau.wi.charter.com)
Date:   05-15-04 22:25

Serena,

Thanks for the info. Benicar is the priciest part of the Marshall Protocol. Some patients have gotten lots of samples from their doctors. And the manufacturer, Sankyo Pharma has a "needy meds" program called the Open Care Program. The phone number is 877-472-6596.

To qualify you need to be a legal U.S. resident, have no prescription meds
coverage and meet certain income requirements depending on the number of people in your household. (For example, a one person household
income must be under $16,150.)

If you qualify, the doctor's office must call them at the above number to
request an application for you to fill out. They will fax the application to
the doctor's office right away.

To complete the application, you must provide financial statements (tax
return or Social Security Disability benefits statement, for example). If
you have medical insurance, they require a copy of your insurance card.

Meg

 
 Re: Medication costs and purchasing strategies
Author: Meg (---.188.240.36.euc.wi.charter.com)
Date:   06-05-04 11:28

Author: John Dresser (host-69-144-212-60.csr-wy.client.bresnan.net)
Date: 06-04-04 10:59

Drug procurement and pricing comparisons.

For those of us who have to buy our drugs without insurance benefits, or, as in my case, have a high annual deductible, I would like to share some of my shopping suggestions and price results. I believe these might be about the lowest we can expect, but perhaps someone else out there has found better prices and would write in to report prices and pharmacy.

If you are paying more than these prices, try using this information as leverage to bargain for better pricing at your local pharmacy. I am using the Walmart pharmacy, which is probably available to most of us in the U.S.

Benicar 40mg (any quantity, I suggest at least a min of 100 caps) $1.30 each
Minocycline 100 mg 100 caps $.90 each
Zithromax 250 mg 30 tablets (easy to split) $7.00 each


I first bought Minocycline at Costco, did not mention my insurance benefit, and they sold 100 x 50 mg caps for $59.49, or $.59 each. The online price at Costco would have been $50.39. I since have learned the price might have been discounted more if I had told them about my insurance.

My first Benicar tabs were free samples from my doctor, so if you are just starting out, ask your Doc for as many freebies as he can spare! I then paid cash at Walmart, but later learned they would give me a better price if I went through my insurance company, even though I would pay cash each time anyway (since I have a very high annual deductible).

The insurance company eventually restricted my purchase to a 21 day supply, and even then, I often could not get all 63 tabs because they rarely had that much in stock! I eventually had a chat with the pharmacist at Walmart, and reasoned that she should allow me to buy directly, with cash, (not involve the insurance company) and pay the much better insurance discounted rate. This way you get the best possible price, and you should be able to buy much greater quantities to save yourself trips to the pharmacy every three weeks. ( Plus…….if you don’t have to share this info with your insurance company, it might help keep your premiums lower)

If you do have insurance, keep track of your annual expenses and then be sure to submit these cash purchases if you reach your annual deductible, so to the insurance company so they can be counted toward your deductible.

Apparently each Walmart Pharmacist has authority to adjust pricing for the local market or as he/she sees fit. I reasoned that it was not fair to charge a premium price to the unfortunate person who did not have insurance coverage, then give a discount price to customers who have insurance. She agreed! Use this reasoning with your local pharmacist if they balk giving you discount pricing when you initially show them my prices listed above.

I like to estimate the likely quantity I expect to need to get through the protocol, and ask my Doc to prescribe that full amount at one time. That way, since I am not limited to a 3 or 4 week supply by the insurance company, I can negotiate better discounts based on quantity, and don’t have to hassle with frequent trips to the pharmacy. Even if you have a prescription for 6 months supply of Benicar…….say 600 x 40mg, you might only buy 300 at a time, or whatever makes sense for you. Be sure to insist on the best price no matter what quantity you decide to buy.

Quantity does not seem to be an issue for Benicar, but I was able to get better pricing for Mino and Z by purchasing larger quantities. I progressed to 100 mg of Mino much sooner than my initial 100x 50mg supply ran out, so I ended up buying 100 x 100mg caps for my second and hopefully last purchase ofMino. I purchased Zithromax, 30 x 250mg caps, and hope that will be enough to finish the protocol. The next higher order quantity discount for Z was way too much for our estimated needs.

Please write in if you find better prices or procurement ideas. I hope this info helps you.
Please do not mention my name at Walmart, in case of repercussions toward my local Pharmacist. Just tell them this was the price given at another Walmart store.

Best of luck! John D

 
 Re: Medication costs and purchasing strategies
Author: Meg (---.188.240.36.euc.wi.charter.com)
Date:   06-05-04 11:32


This site researchs to find the lowest online prices of meds.

 
 Re: Medication costs and purchasing strategies
Author: John Dresser (---.csr-wy.client.bresnan.net)
Date:   06-05-04 13:51


I posted the note above before I saw this thread, so please notice this addendum added to my letter at the top of this thread:

"Trevor writes that drugstore.com sells 30 minocycline 100mg for $20"

So that would be a better price ($.66 ea) for Mino, but check to see if it is still competitive after shipping cost.

John Dresser

 
 Re: Medication costs and purchasing strategies
Author: Amber Jean (---.aus.amer.dell.com)
Date:   06-07-04 14:03

does anyone know if either of the drugs on the MP are covered the Medicaid ?

 
 Re: Medication costs and purchasing strategies
Author: Meg (---.188.240.36.euc.wi.charter.com)
Date:   06-07-04 16:28

Amber Jean,

Medicaid programs are administered by each state so there might be some variance. Your best bet is to contact a local pharmacy for clarification.

Meg

 
 Re: Medication costs and purchasing strategies
Author: Betty Campbell (203.214.81.---)
Date:   06-10-04 00:42

Has any Canadian Sarc patient ever contacted MediSave.ca for Benicar?

http://medisave.ca/DrugMoreInfo2547.aspx

Discount Onine Pharmacy,
Vancouver B.C. Canada

BENICAR 40mg x 98 =$119.00

Betty C

 
 Re: Medication costs and purchasing strategies
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   06-10-04 10:39

John,

I have noticed some of the Canadian prescription pharmacy sites have a notice that they will not supply Benicar to Canadians.

Belinda

 
 Re: Medication costs and purchasing strategies
Author: Betty Campbell (203.214.80.---)
Date:   06-10-04 17:09

John, Belinda,

A new sarc-infoer here in Melb. alerted me to the above website, and I emailed CustomerService@M.. re shipping to Australia, and ?cost plus shipping cost. Received reply:- "Sorry for delay but we have not shipped to Australia before and do not know the cost of shipping. You would have to ensure that Australia customs would allow the package to enter the country in order for us to be able to send you the Benicar. If you are still interested in ordering then we can proceed to figure out the shipping costs."--(end of quote).

When my first supply of 90 x 40mg Benicar arrived from U.S,(via usadrug.net) our Aus$ was worth 75cents to US$.1 Our Aus$ is at present only worth 70cents to US$. Therefore my present supply =Aus$3.00 per tab.,but next time would be a whole lot more. Therefore no harm investigating further.(shipping costs also increase when our dollar goes down, and we must add that to the total, to get cost per tab.

My husband is very impressed with Benicar and says he sees a difference in me, so is happy to keep up the supply, but is also investigating other avenues of supply. (Munich, Germany)
One must also take into account that usadrug.net are very experienced in the shipping side of it, and security side. I think MediSave states it is a secure site too.
Belinda would know the right thing for you to do, being from USA side of the border. I am, of course, looking at the Aussie side of things.

Thanks to you both for your input, Betty C

 
 Re: Medication costs and purchasing strategies
Author: John Dresser (---.csr-wy.client.bresnan.net)
Date:   06-11-04 11:55

I checked the info for buying Benicar at Medisave.ca (Canada online pharmacy)

Unfortunately, the prices posted on that site are actually in US $

You add $14 shipping to $119 for 98 tabs, and it works out to $1.36/ tab,

so you should be better off going to Walmart, Costco or drugstore.com

Sorry......John Dresser

(admin........could you delete my two posts on this issue above?)

 
 Re: Medication costs and purchasing strategies
Author: Meg (---.188.240.36.euc.wi.charter.com)
Date:   06-16-04 19:09

Author: Grant (c207.134.79-146.clta.telus.com)
Date: 06-16-04 17:31

Benicar in Canada --

I emailed a question to MediSave, which is a Canadian internet pharmacy selling drugs to the US. They advised me of the following method of ordering Benicar IN Canada from this Canadian website (but the prices are in US$) see note pasted below....

By comparison, I have been successful so far in having Benicar sent by mail from the US online pharmacy... but haven't tried yet to claim this from my insurance....

Also, tomorrow we'll see if my wife's GP will prescribe the protocol for her. Her ACE test came back today and it is seriously elevated. This along with very high 1,25D and a list of symptoms indicates that we are 'sharing' our TH1 inflammation (sarcoid) -- isn't that romantic!!! NOT!!! ;-0

Grant
----------------------

----- Original Message -----
From: "Grant Corriveau" <grantc@c.. >
To: <CustomerService@M.. >
Sent: Sunday, June 13, 2004 4:05 AM
Subject: Benicar in Canada
...
> I'm on a protocol using the ARB2 drug, Benicar (Olmesartan Medoximil).
> Sankyo does not market this in Canada. So, my physician writes a
> prescription which I then buy online from the States by mail, or which I
> fill at Walmart in the States. As far as I can determine, this is all
legal as it is for my private use.
...
> Is there anyway that I can buy my Benicar from you WITH MY CANADIAN
> PRESCRIPTION?
>
> Thanks for your help in this,
> Grant Corriveau
> Montreal

Grant,

You can order the Benicar and have it shipped directely to your home address
in Canada. What you need to do is to get your doctor to write a letter to
Health Canada to obtain a special access program letter. This will allow
the package to enter the country otherwise, Canadian customs will hold the
package. If you can get this done, we can definitely send you the benicar.
If you have any other questions please call us direct at 604-543-8711.

Regards,
Medisave

 
 Re: Medication costs and purchasing strategies
Author: Betty Campbell (203.214.80.---)
Date:   06-22-04 17:12

I have just taken delivery of 3 x 98 tabs of 40mg of VOTUM (Olmesartanmedoxomil) from Munich, Germany. Total cost in Aus $ was $546.41, being $479.64 for tabs, plus $66.77 Priority paid airmail delivery. It went thru our Customs, of course. Cost per tab would be Aus$1.86.

My husband rang the German-Australian chamber of Commerce on June 4th. They faxed us the name of two pharmacies in Munich. My Gp gave me new script with 2 repeats. We then faxed one of these addresses, on 5th June, and a few more emails went back and forth.

I am on phase 3 of Protocol, and an easy target for Herx, so am staying on the 1/2 tab of Bactrim for a while. Being all out of Benicar, I have reverted to Avapro once more, and am relieved and happy to see this delivery of Votum this morning.

Hope this helps some Aussies, as ever Betty C

 
 Re: Medication costs and purchasing strategies
Author: Pippit (---.asm.bellsouth.net)
Date:   06-23-04 02:27

Betty,

I'm sure this will be a big help to alot of people. Good work!

Pippit

 
 Re: Medication costs and purchasing strategies
Author: Kas (---.mtnk.rnc.net.cable.rogers.com)
Date:   06-25-04 11:45

My bother most likely also has sarc. He lives in South Africa, and there is no Benicar available there. I wonder if any internet drug companies deliver there and what the cost would be?

 
 Re: Medication costs and purchasing strategies
Author: Betty Campbell (203.214.80.---)
Date:   06-25-04 13:24

Kas,

I am sure that the Munich pharmacy who supplied me with the Votum would send to any country, as well as the usadrug.com. It is a matter of trying to find the best price available,and by ordering 3 months supply, presumably the postage/shipping would be about the same as for one months supply. It goes through Customs.

My Invoice from Inter-apotheke Munchen is stated in Euros, and as follows:-
(www.inter-apotheke.de)

3 x 98 tabs Votum 40mg @ 88.80 = 266.40
Postage Air Priority = 12.00
Bankfee = 25.00
-------------
Total 303.40
------------
Remember the above is Euros, and in our present Australian currency, my bank account was charged as stated in my message dated 06-22-04.

Betty C

 
 Re: Medication costs and purchasing strategies
Author: Kas (---.mtnk.rnc.net.cable.rogers.com)
Date:   06-25-04 15:17

Thanks so much, Betty. I really appreciate it and will pass the information on to him asap.

So VOTUM is the European name for Benicar? I must tell him that too.

 
 Re: Medication costs and purchasing strategies
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   06-25-04 22:00

Kas,

"Votum" is the German name for the drug known as olmesartan, which is the active ingredient in Benicar. You can search google for the words votum and olmesartan and translate the pages, because most of what you will find will be in German.

Belinda

 
 Re: Medication costs and purchasing strategies
Author: Meg (---.188.240.36.euc.wi.charter.com)
Date:   06-25-04 22:21

Olmesartan is available in the following countries under these names:

USA-Benicar
Germany-Votum
Netherlands-Olmetec
UK-Olmetec
Spain-Olmetec
Japan-Olmetec
Ireland-Omesar

Not available in:
Australia
Cambodia
Canada- no subsidiary
New Zealand
Mexico
South Africa

 
 Re: Medication costs and purchasing strategies
Author: Betty Campbell (203.214.81.---)
Date:   06-26-04 19:01

Kas,

A popular currency site is http//www.xe.com/

Click on "currency converter".

Regards,
Betty C

(Thank you Belinda and Meg for the above info.)

 
 Re: Medication costs and purchasing strategies
Author: Betty Campbell (203.214.81.---)
Date:   06-29-04 18:12

The email address for the pharmacy in Munich, Germany, is;--

info@inter-apotheke.de

the pharmcist's name appears to be Ruth Bruer and all correspondence is in English language and promptly attended to.

Betty C

 
 Re: Medication costs and purchasing strategies
Author: Lane (---.asm.bellsouth.net)
Date:   07-13-04 04:46

How can my dr. write my prescription to prevent me so many trips to the pharmacy? thanks Lane

 
 Re: Medication costs and purchasing strategies
Author: Meg (---.115.72.119.static.euc.wi.charter.com)
Date:   07-13-04 06:44

Lane,

I'm assuming you mean the minocycline. Ask doc to write it for the standard 100mg twice daily. This will maximize your insurance benefit or reduce your pharmacy trips greatly since you will only be taking it every other day. If you are still taking a lower dose, you shouldn't need so many 50mg capsules though.

Meg

 
 Re: Medication costs and purchasing strategies
Author: Lane (---.ath.bellsouth.net)
Date:   07-13-04 16:33

Thanks Meg, that was interesting to know about the minocycline, but I was really taking about the benicar. I pay for half the month and the insurance co. the other half. I would at least like to get it once a month. My dr. is cooperative especially when I already have the answer. Thanks for your advice Lane

 
 Re: Medication costs and purchasing strategies
Author: DJ (---.montanavision.com)
Date:   07-13-04 18:32

Lane,

Benicar dosing information states that 'dosage must be individualized.' That was all my Dr. needed to prescribe 100 tabs a month. My BC/BS pays per their schedule for brand names. A note from your doctor to the insurance co. might make the difference.

Good luck,
DJ

 
 Re: Medication costs and purchasing strategies
Author: Meg (---.115.72.119.static.euc.wi.charter.com)
Date:   07-13-04 19:59

Lane,

I'll send you a letter that your doctor can use to persuade your insurance company to pay for all the Benicar pills/month that your doctor has ordered.

Meg

 
 Re: Medication costs and purchasing strategies
Author: Lane (---.ath.bellsouth.net)
Date:   07-14-04 02:54

Meg, thank you! thank you! thank you! Lane

 
 Re: Medication costs and purchasing strategies
Author: Lane (---.asm.bellsouth.net)
Date:   07-14-04 15:20

Thanks DJ for the input but my bcbs schedule want to limit me to 30 pills per month @ a $25 copay. Meg my appt. with the dr. is thursday morning 7/15 if you could get me that letter it would be a blessing. I have been fighting this alone with the ins. co. and I want to concentrate on getting better. And again thanks I don't know how you fine the time to assist everyone. Lane

 
 Re: Medication costs and purchasing strategies
Author: Meg (---.115.72.119.static.euc.wi.charter.com)
Date:   07-14-04 15:28

Lane,

I sent the letter yesterday but I will send it again along with a list of persuasion studies should he need it for clarification. Depending on BCBS policy, the doc may only have to call. Keep in mind that doctors really resent insurance companies telling them how to practice medicine so he should be in your corner on this one.

Meg
PS. If doc needs to call, be sure to get the number for him and give him the list of studies/arguments for the higher dosage of Benicar.

 
 Re: Medication costs and purchasing strategies
Author: Lane (---.ath.bellsouth.net)
Date:   07-14-04 18:01

Meg I don't know why I did not recieve the letter, I recieved the first protocol from you with no problem. I will keep checking my e-mail. thanks Lane

 
 Re: Medication costs and purchasing strategies
Author: Ms Dale (---.proxy.aol.com)
Date:   07-16-04 05:29

This article was published in a local newspaper. I have not checked it out - but wanted to share it - in case others would like to investigate.

Special programs offer free prescription drugs:

The Cost Containment Research Institute in Washington, D.C. has just published a 48-page booklet. "Free and Low Cost Prescription Drugs 7th Edition." The revised booklet gives information on how and where to get free and low cost prescription drugs.

"Many major drug companies provide free or low cost medication, but rarely,
if ever, publicize the programs," says Gary Nave, director of The Institute.
"We've published an A to Z listing of all the drugs that are available through patient assitance programs, for free or at very low cost directly from the manufacturer."

Consumers can receive a copy by sending $6 to cover the cost of printing, postage and handling to: Institute Fulfillment Center Booklet #: PD-75,
P.O. Box 210, Dallas, PA 18612-0210. Consumers can also get more information from the Insitute's Internet web site:
www.institutedc.org

Maybe this will help someone - maybe not - but thought I would share
what I read in this article.
Ms Dale

 
 Re: Medication costs and purchasing strategies
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-16-04 05:38

MsDale,
Sankyo has a "needy meds" program for benicar which has been discussed in the thread at this URL
http://sarcinfo.com/phorum/topic-1-4807-4807.html

There is no need to send $6 to any organization, the details are listed in that thread.

..Trevor..

 
 Re: Medication costs and purchasing strategies
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-16-04 15:00

John,
This document
http://www.ukmicentral.nhs.uk/pressupp/costs/Infections-bar.PDF
shows that a 150mg capsule of demeclocycline costs 20.6 pence (about 37 cents) in the UK.

Such is the state of our health system...
..trevor..

 
 Re: Medication costs and purchasing strategies
Author: John Dresser (---.csr-wy.client.bresnan.net)
Date:   07-16-04 16:39

Well..........it used to be you could pay for a trip to Europe with the savings by taking delivery of your car in Europe..............let's see, wonder how much airfare from Wyoming to London is???.............anyone for a drug run?

USA health system..........if it wasn't so rediculous, it would be funny! We just do not dare get sick, because dealing with the system and the stress over costs etc, just makes one even more ill !
I hope if there is anyone left out there with employer paid health coverage.......you appreciate how fortunate you are!
John Dresser

 
 Re: Medication costs and purchasing strategies
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   07-19-04 23:25

Here is the link to information about the Sankyo Pharma Open Care Program (sometimes called Needy Meds).
Sankyo Pharma Open Care Program

If you have Adobe Acrobat, you can download an application from that link. There are also guidelines for the program and overall instructions.

Belinda

 
 Re: Medication costs and purchasing strategies
Author: John Dresser (---.csr-wy.client.bresnan.net)
Date:   07-20-04 15:36


I made my drug run to Walmart today, and they did match Drugstore.com price for: Ketoconazole 2% cream 60 gram tube for $33 (US)

I picked up the anitbiotics for phase 3 at the same time, and it was fun to hear about the conversation my doc had with the pharmacist when he called in the prescription. She normally has a consult with customers to make sure they understand how to use the drugs, but this time she said, "well, I guess you know more about this stuff than I do! "

She got a kick out of my request for her to match the UK price for Demeclocycline. I continue to feel very fortunate to have a very cooperative doctor and pharmacist. I feel bad so many others have been having such difficulty finding doctors and procuring the drugs. John Dresser

 
 Re: Medication costs and purchasing strategies
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-20-04 15:47

John,
All of us are spending a heck of a lot of our time with the NIH, and also the CFS Doctors right now to try and open up new of opportunity for those folks whose pulmonologists are deserting them.

Anybody having trouble finding a doctor should let us know, as we now have a whole lot of CFS docs which might narrow down your search. You can ask them to give you the MP for your Chronic Fatigue. If your sarc happens to go away at the same time, I guess that will just be a bonus

..trevor..

 
 Re: Medication costs and purchasing strategies
Author: kevan (---.pacificinsight.com)
Date:   08-17-04 11:37

Hi
I am a Canadian and I wish to import Benicar. Have any other Canadians done this and how have you done this? Has there been any trouble with customs? I believe my doctor will write the prescription. He has been very supportive of the MP.
Any advise is greatly appreciated.

Kind regards
kev

 
 Re: Medication costs and purchasing strategies
Author: Meg (---.117.101.148.euc.wi.charter.com)
Date:   08-17-04 20:38

Kevan,

Scroll up to Grant's post on importing Benicar to Canada. There are links to online sites that Canadians have used in this thread from marshallprotocol.com.

Meg

 
 Re: Medication costs and purchasing strategies
Author: kevan (---.pacificinsight.com)
Date:   08-31-04 13:28

Hi
To anybody who has imported Benicar into Canada.

My doc has given me a prescription for Benicar. I now need to try and import it into Canada. I have placed an order with International Pharmaceutical Services. They have accepted the order and did not need to see the prescription so I have kept it just in case customs needs to see it. I do not know if Canada customs will hold the package up or not. Has anybody had any trouble with customs?

Kind regards
kev

 
 Re: Medication costs and purchasing strategies
Author: John Dresser (---.ipt.aol.com)
Date:   11-24-04 12:12

Meg,
I’m trying to set up an appointment with a new doctor as my prescriptions are going to run out Dec 24. I was hoping to delay med expenses until after Jan 1, for insurance deductible reasons. I could possibly ask my previous doctor to renew the prescriptions, but am afraid to impose on him since I moved away and no longer will see him.
I am well into phase 3 and about 8 months into the MP. Do you think it would be a setback to stop the antibiotics and Benicar for a week or two?
My current herx symptoms are just some dizziness and just a little sore eyes, but are substantially reduced from the maximum noticed earlier in this phase. Joints are still achy, but that could be explained by the hard physical work I have been doing in recent weeks. I still need a lot of sleep, but am getting much closer to what I think is normal.
I have yet to start the alternate antibiotic . I guess I will have to wait to get some more Zithromax and my Benicar will run out before Jan 1. Could you please guess/advise what quantities I should purchase? I assume I will only need to get more Mino, Zithromax and Benicar to finish up the MP?
Would it be worthwhile to get a Vit D blood test, now, or when I see my new doctor soon?
Could Sarc explain extremely slow healing of a finger injury? I smashed my little finger back in early September, something that I would expect to heal in two weeks max, and it still hurts when touched hard or stressed.
Thanks John Dresser

 
 Re: Medication costs and purchasing strategies
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   11-24-04 14:14

John,

It's okay to take a break from the antibiotics but you may miss the Benicar. Perhaps your former doctor wouldn't mind ordering a small quantity just to get you through till the New Year.

Yes, Th1 inflammation delays the healing process because of high levels of angiotensin. I'm glad to hear that you have experienced significant symptom resolution. That should encourage you to continue. There is no definite length to the third phase. We call it the clean-up phase because we use Benicar and differenct antibiotic combinations to see if all the bacteria are killed. You will know when your sarc symptoms are gone and when you can no longer provoke a Herxheimer reaction with any of the recommended antibiotic combinations.

Best,

Meg

Meg Mangin, R.N.-moderator-sarcoidosis-nerve, skin and joints; started MP 12/02; average B/P 80/50; in phase three;still herxing mildly with 90% symptom resolution

 
 Re: Medication costs and purchasing strategies
Author: John Dresser (207.118.48.---)
Date:   01-05-05 12:10



Update on my Walmart prices:

I recently moved to Montana, so I had to start over with a new pharmacist.
Fortunately, the local Walmart pharmacist had no problem honoring the pricing I negotiated at the previous Walmart. Even better.........she said she could do better on the Minocycline........now $.80 compared to $.90 before.
If you scroll to earlier posts, you will see :
"Trevor writes that drugstore.com sells 30 minocycline 100mg for $20"
So that would be a better price ($.66 ea) for Mino, but check to see if it is still competitive after shipping cost.


The difference for mino doesn't add up to very much compared to the other drugs, so I just pay the Walmart price so I can get everything in one place.

Benicar 40mg $1.30 each
Minocycline 100 mg $.80 each
Zithromax 250 mg $7.00 each

What we really need to do is put the screws to the Benicar company to see if we can't get some sort of quantity discount! Heck, their business must really be picking up thanks to us! When I buy Benicar at Walmart, I just say, "give me all you have in inventory" This time it was 256 tabs for $335
(you might want to call a week ahead to have them stock up, if you wish to buy large quantities)

John Dresser
Sarc- Lungs dx (biopsy) 1985, pred 3yrs, Started MP 2.10.04 **1,25D=58.1 * 25D=18.1 **-phase 2- 6.1.04, phase 3- 9.16.04, strongest herxs 1st half phase 3. 4.18.05 **1,25D=13 * 25D=6 ** light herxing in last phase 3 abx combo 10/05

 
 Re: Medication costs and purchasing strategies
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   01-07-05 20:21

John,

I am happy that Benicar is, in general, the least expensive of all the angiotensin receptor blockers.

Belinda

*MODERATOR* Dx: FM 80's, sarcoidosis '01; Lung, skin, spleen, liver and neuro. Refused Prednisone. 7/02 1,25-D 61.1, 25-D 14.3. MP since '02 PhaseIII with symptoms gone, slight Herx. Improved PFTs, CTs, X-ray, energy and stamina. I walk 3-4 mi daily now

 
 Re: Medication costs and purchasing strategies
Author: John Dresser (207.118.49.---)
Date:   01-11-05 21:30

I heard something on the news tonight about drug companies.....will soon be giving discount cards for people without health insurance. I believe Zithromax was one of the drugs mentioned. Something to watch for or ask about.

There was something exciting on Marshallprotocol.com about Benicar pricing:

"We paid only $67.47 plus S&H (total $74.97) for 120 tablets of Benicar (40 mg) at Abrams Royal Pharmacy in Dallas, TX -- which is a one month's supply at 4 tablets a day (ie, every 6 hrs).
Abrams is a very well-known pharmacy which does a lot of mail order shipping for MCS (& CFIDS) patients all over the country. 214-349-8000"

see:
http://www.marshallprotocol.com/view_topic.php?id=186&forum_id=11&highlight=abrams+pharmacy

John Dresser
Sarc- Lungs dx (biopsy) 1985, pred 3yrs, Started MP 2.10.04 **1,25D=58.1 * 25D=18.1 **-phase 2- 6.1.04, phase 3- 9.16.04, strongest herxs 1st half phase 3. 4.18.05 **1,25D=13 * 25D=6 ** light herxing in last phase 3 abx combo 10/05

 
 Re: Medication costs and purchasing strategies
Author: Lottie (---.proxy.aol.com)
Date:   01-11-05 22:16

John,

Unfortunately, in a post further down on that thread is the following...

"Sorry to be the bearer of bad news...I just called Abrams Royal Pharmacy about their VERY good deal on Benicar and they said that was a mistake, that they had misquoted the price to one person, and so followed through for that person. They have been getting lots of calls and the actual price is around $180 for #120. They said they were sorry for the misunderstanding..."

We do appreciate you working to help us all keep the price down! Keep up the good work!

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: Medication costs and purchasing strategies
Author: John Dresser (207.118.49.---)
Date:   01-11-05 22:29

Lottie, thanks for correcting my error. I had just gone back and scrolled down to find that posting telling us it really was too good to be true!

John Dresser
Sarc- Lungs dx (biopsy) 1985, pred 3yrs, Started MP 2.10.04 **1,25D=58.1 * 25D=18.1 **-phase 2- 6.1.04, phase 3- 9.16.04, strongest herxs 1st half phase 3. 4.18.05 **1,25D=13 * 25D=6 ** light herxing in last phase 3 abx combo 10/05

 
 Re: Medication costs and purchasing strategies
Author: Dave Schlesinger (---.lv.lv.cox.net)
Date:   01-14-05 22:50

Hi guys,
I know nothing about this, but is there some way to get a licenced pharmacist to supply all of the protocol's scrip needs. I only see my doc 1x a year to get the scrips as he refuses to help with any of the protocols testing or pred weaning tests I need. If we all got our scrips done by one company or started a coop through a cooperating pharmacist or company we might reduce prices. I have no insurance, and sometiimes by buying in quantity or matching prices I will get reduced rates. If there was a way to e-mail scrips from a doc directly to one centralized place than we might all benefit. I will talk to local pharmacist friends in the next couple of weeks and see what I can find out,
Dave

 
 Re: Medication costs and purchasing strategies
Author: John Dresser (207.118.49.---)
Date:   01-15-05 11:16

Dave,
I'm not a moderator here, but I'm sure they will tell you your doc needs to be on board with the MP to monitor your meds and council you as far as dosages and timing. If your current doc is refusing to cooperate, you need to find a doc who is willing to learn about the MP.
It is possible to have serious problems and you need to have access to a doc for emergencies.
I have to pay out of pocket for my scripts, so I am always shopping for pricing and working with my Walmart pharmacist to purchase in larger quantities when that gives me a better price. Scroll up in this thread to learn about some of the things we are doing. It helps if your doc gives you flexibility in prescriptions so you can buy larger quantities to supply you for 6 months or so. (That is more for your convenience than pricing, as Walmart gives me the same price regardless of quantity).
I've been on the MP for almost one year and have managed to do it with only two doc visits, mainly to get the D blood tests at the start. Since then, he has authorized scripts based on my phone call requests to his office. If you can set something up like that, it will minimize office visit costs, but you need to be prepared to somehow have that doc available for consultation in case you experience unusual herx etc.
It would be nice if we could do something as a group to get a better discount, especially with Benicar, but I won't hold my breath about improving on what we can do with the current online sources.
If anyone out there has an idea or finds a pharmacy that is anxious to provide us as a group, probably online, please write to this thread and we can use this location as a clearinghouse to communicate any improvements on script sources and some sort of group deal.
If Walmart is saying $1.31/ tab for Benicar is pretty close to their cost, it is unlikely another source has any better purchasing power to improve on that, but it would be nice to find out!

John Dresser
Sarc- Lungs dx (biopsy) 1985, pred 3yrs, Started MP 2.10.04 **1,25D=58.1 * 25D=18.1 **-phase 2- 6.1.04, phase 3- 9.16.04, strongest herxs 1st half phase 3. 4.18.05 **1,25D=13 * 25D=6 ** light herxing in last phase 3 abx combo 10/05

 
 Re: Medication costs and purchasing strategies
Author: Rick MacKinzie (---.dsl.pltn13.pacbell.net)
Date:   01-24-05 11:21

Hi Trevor and all . . .

As I have had to occassionally use more than the prescribed 3xday, the pharmacist recommended getting a new Rx for 40mg #120ea to be taken as directed . . . in order to accomodate taking more for "herx" problems.

Health Net is giving me and my doctor a difficult time renewing the Benicar and has requested . . . "2 peer reviewed journal articles supporting the safety and efficacy for Benicar 160mg/day" . . . I never requested 160mg but rather additional tabs so as to not be caught short when I had to use them every 4-6 hours instead of the prescribed 8 hour intervals.

I hope this is clear and can use some help. Which documents would fit their request? Any additional assistance would be appreciated.

Thanks,

Rick in Napa

Sarcoidosis - Lung - Initial Blood - Jan03 1,25-D 47.9, 25-D 19.3, ACE 122; Began PhIII May 03/05 - Flushing . . . Last Blood May 05 1,25-D 23, D-25 12, ACE 89, D-Ratio 1.9 10/05 Living w/little problems . . .

 
 Re: Medication costs and purchasing strategies
Author: Admin (---.ventca.adelphia.net)
Date:   01-24-05 11:34

Rick,
I wrote to the FDA about this only this morning. The truth is that the FDA said Benicar was safe, and never set any limit of dosing with respect to that safety, but the safety officer commented that any limit was above the normal hypotensive dosage. The FDA were given safety test data to 320mg/day, but they commented that longterm tests were only run as high as 80mg/day. I have sent copies of the FDA findings to Medco, but they have ignored them.

Efficacy is another matter, all you can do is submit my own papers, at least until Dr Sharp's is actually published. But Medco (who are almost certainly the ones causing you this problem) are being pig-headed, and I doubt that you will get far with them.

After I hear back from the FDA I might ask you to complain directly to them, just to stir the pot a little

So submit our Russian paper (it is peer reviewed -LOL)
http://tinyurl.com/6md8g

and the Autoimmunity reviews paper,
http://dx.doi.org/10.1016/j.autrev.2003.10.001

and the FDA package insert with the words "dosage must be individualized" highlighted and ringed.
http://www.fda.gov/cder/foi/label/2002/21286lbl.pdf

Ultimately it is your Doctor who must tell Medco that they have to abide by his decision re safety and efficacy. But most Doctors are afraid of doing that, especially when it is being suggested to them that the treatment is unsafe. I have seen ZERO evidence that Benicar at the doses used in the MP is unsafe. Medco certainly has not come up with any, despite repeated written requests.

..Trevor..

 
 Re: Medication costs and purchasing strategies
Author: Rick MacKinzie (---.dsl.pltn13.pacbell.net)
Date:   01-24-05 12:45

Hi Trevor,

Thanks for getting back so quickly.

You mentioned "your papers", which ones exactly. . .

As for the other papers, the Russian is not in english and I am sure they
will dismiss it right off or ask for it in English. The Autoimmune is only the abstract and requires a member name to log on. The third one is very comprehensive but does not relate directly to Sarcoid unless they will read it. So, I am wondering then, if it will not just be a waste of time? Maybe waiting for your visit to the FDA? But then we all know how that will go and how long it will take for them to approve anything.

My doctor will prescribe it but I will have to pay for anything above the #90.

Thanks again and let me know what you need for the FDA.

Rick in Napa

Sarcoidosis - Lung - Initial Blood - Jan03 1,25-D 47.9, 25-D 19.3, ACE 122; Began PhIII May 03/05 - Flushing . . . Last Blood May 05 1,25-D 23, D-25 12, ACE 89, D-Ratio 1.9 10/05 Living w/little problems . . .

 
 Re: Medication costs and purchasing strategies
Author: Admin (---.ventca.adelphia.net)
Date:   01-24-05 13:11

Rick,
They only asked for 'peer review' papers. Give them the Russian paper as it is peer-reviewed and most attentive to the issue of dosage. The fulltext of the Autoimmunity Reviews paper is linked from the top of this page. But give them the free abstract. Else you will just have to fork up $30, or so, to the journal - that's the way things are done in this industry - and the insurance company knows they are putting you through the hoops.

The final one is the FDA prescribing instructions, and directly relates to dosage safety. Please look over it more carefully. It is a legal document and is worded with legal precision. There is NOTHING in it about any maximum safe dose, except as pertains to doses hundreds of times above the therapeutic levels.

Rick, I know how tough it is for you, but the insurance company has you over a barrel. Submit the stuff I suggested originally and wait for them to come back with another request. Remember, you do not have to satisfy your own standards, but the standards of the insurer, which may not be as demanding for fulltext as you are.

The FDA will take forever and a day before they move. Which doesn't mean that we shouldn't make sure they start now. I am hoping that we can come to a better arrangement with them, however.

..trevor..

 
 Re: Medication costs and purchasing strategies
Author: Freddie R. Ash (---.ipt.aol.com)
Date:   01-24-05 16:47

HI ALL

This is Fred in WV. Rick I have had problems, but what I have had to do, and it cost me more is to get the local Rite AId to fill mine for the 20mg 4xday. But a few days ago when I got mine refilled it cost me more than it had been costing. I do not know if they raised the price or what. I had been paying for 120 pills, cost - insurance paid 223.99 and I paid 62.23 but the new price they charge me was cost - insurance paid 247.99 and I paid 168.53. That is a total additional cost of 130.30. That is more than 1.00 more for each pill. I may check to see why this was so much higher. I sure hope we get things worked out so we can get what we need to fight sarcoidosis the safe and only way.

Your friend in sarcoidosis
Freddie

freddie
Dx:sarc 2/82but had at least since 8/72. skin, eyes, lungs, intestines, spleen,joints,heart,4bypasses done 2times,on prednisone for few weeks(into mental hospital for 3weeks) tried to stay out of sun since 82, now watching all vit D,6/23benicar

 
 Re: Medication costs and purchasing strategies
Author: Admin (---.ventca.adelphia.net)
Date:   01-24-05 17:00

Fred,
The cost of a 20mg Benicar tablet and a 40mg Benicar tablet is the same, so you would be better to get 40mg and break them in half. In fact, that should cost you HALF as much money. Additionally, 80mg a day is DEFINITELY a dosage that the FDA prescribing instructions at this URL says is safe (look at the graph, for a start)
<http://www.fda.gov/cder/foi/label/2002/21286lbl.pdf >

If Medco balk at 80mg daily please let me know immediately.

..Trevor..

 
 Re: Medication costs and purchasing strategies
Author: Rick in Napa (---.dsl.pltn13.pacbell.net)
Date:   01-24-05 18:47

Trevor,

I understand and thank you for your suggestions . . . But . . .
How are they to read the Russian paper? Won't they just tell to take a hike?

Thanks again.

Rick in Napa

Also, Thanks to Fred for his input.

 
 Re: Medication costs and purchasing strategies
Author: Rick in Napa (---.dsl.pltn13.pacbell.net)
Date:   01-24-05 19:00

Trevor,

I just found the English text on page two of the Russian paper . . .

Thanks,

Rick in Napa

 
 Re: Medication costs and purchasing strategies
Author: itiona (---.client.comcast.net)
Date:   01-25-05 12:25

I was hoping to find out the details of the up-comming conference.
Thanks

Dx sarc 5/04, Mp 7/04, currently on 5th month of stage 3 of mp,1,25 D=31.6, 25 hydroxy=10.4 wbc=3.8(low) sed rate=3

 
 Re: Medication costs and purchasing strategies
Author: Freddie R. Ash (---.ipt.aol.com)
Date:   01-25-05 16:40

HI TREVOR

This is Fred in WV. I did have problems with Medco back in July 2004 when I first went on the Benicar. My doctor wrote a Rx for 90 days at 20mg 4xday and they called my doctor and told him they were not going to pay for any experimental drug to treat sarcoidosis. I have talked to you about this back at that time, please check the other topic under medco something or other, I can't remember the exact name. You said something about my case was on the CEO's desk by name. I have never heard anythign since.

Your friend in sarcoidosis
Freddie

freddie
Dx:sarc 2/82but had at least since 8/72. skin, eyes, lungs, intestines, spleen,joints,heart,4bypasses done 2times,on prednisone for few weeks(into mental hospital for 3weeks) tried to stay out of sun since 82, now watching all vit D,6/23benicar

 
 Re: Medication costs and purchasing strategies
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-25-05 19:03

itiona,

Autoimmunity Research Foundation is holding a conference, "Recovering from Chronic Disease", on the weekend of March 12-13, 2005 in Chicago.


This conference will bring together physicians, patients, and policy-makers to review the effectiveness of anti-bacterial therapy in Th1 immune diseases, including sarcoidosis, chronic fatigue syndrome, chronic Lyme disease, Rheumatoid Arthritis and fibromyalgia. Recovering/recovered patients on the Marshall Protocol will have a chance to mentor those with less experience.


We have an excellent lineup of speakers, including the chief policy-maker for sarcoidosis at the NHLBI, National Institutes of Health , Dr James Kiley. Dr. Trevor Marshall, Dr. Leonard Jason and Dr. Lida Mattman are also featured speakers.


The detailed information and registration form are on the AutoimmunityResearch.org website (Click Here)

Hope to see everyone there,

Meg

 
 Re: Medication costs and purchasing strategies
Author: Rick MacKinzie (---.dsl.pltn13.pacbell.net)
Date:   01-26-05 17:42

Hi Trevor and all . . .

Yesterday I submitted a personal letter to my insurance carrier (Health Net) thru my Pulmonologist, along with a list of links to several documents which you suggested as well as a few that I thru in for good measure.

This afternoon I received an approval for Benicar 40mg #120 for one year.
Was I surprised! And the pharmacist was amazed that it worked.

Anyone who would like a copy of my submission for the insurance company
need only e-mail me and I will send you the contents and links.

Maybe it will help some of you, hopefully.

Rick in Napa

Sarcoidosis - Lung - Initial Blood - Jan03 1,25-D 47.9, 25-D 19.3, ACE 122; Began PhIII May 03/05 - Flushing . . . Last Blood May 05 1,25-D 23, D-25 12, ACE 89, D-Ratio 1.9 10/05 Living w/little problems . . .

 
 Re: Medication costs and purchasing strategies
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-26-05 19:08

Rick,

That's great news! I'm glad you didn't give up.

I would be happy to share your letter with anyone who is having problems with their insurance carrier. I'll send you an email.

Best,

Meg

 
 Re: Medication costs and purchasing strategies
Author: Sue Sullivan (---.dsl.stlsmo.swbell.net)
Date:   01-26-05 19:55

Rick,
I would like a copy of your letter and list of documents you sent to your insurance co. Meddoo has just begun refusing to fill my Benicar even though they have been filling it since Aug. of 2003.
Thanks,
Sue in St. Louis

Sue in St. Louis

 
 Re: Medication costs and purchasing strategies
Author: Sue Sullivan (---.dsl.stlsmo.swbell.net)
Date:   01-26-05 19:57

Meg or Trevor,
I have been under the impression I needed to take the Lederel brand of Minocin not a generic. My doc wrote a letter and that brand was approved by Medco. Do I need to continue with the name brand?
Thanks,
Sue in St. Louis

Sue in St. Louis

 
 Re: Medication costs and purchasing strategies
Author: Rick MacKinzie (---.dsl.pltn13.pacbell.net)
Date:   01-26-05 20:23

Hi Sue in St Louie . . .

Meg has the letter and will forward to those interested.
But d send me your email and I will forward the letter.

Rick in Napa
napamac@s..

Sarcoidosis - Lung - Initial Blood - Jan03 1,25-D 47.9, 25-D 19.3, ACE 122; Began PhIII May 03/05 - Flushing . . . Last Blood May 05 1,25-D 23, D-25 12, ACE 89, D-Ratio 1.9 10/05 Living w/little problems . . .

 
 Re: Medication costs and purchasing strategies
Author: Rick MacKinzie (---.dsl.pltn13.pacbell.net)
Date:   01-26-05 20:25

Sorry Sue, I guess we can't send ID info.
So wait for Meg to get it to you. And I do hope that it works for you and others.

Best of luck!

Rick in Napa

Sarcoidosis - Lung - Initial Blood - Jan03 1,25-D 47.9, 25-D 19.3, ACE 122; Began PhIII May 03/05 - Flushing . . . Last Blood May 05 1,25-D 23, D-25 12, ACE 89, D-Ratio 1.9 10/05 Living w/little problems . . .

 
 Re: Medication costs and purchasing strategies
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-26-05 20:29

Rick,

The easiest thing for you to do would be to post the letter in this thread.

Best,

Meg

 
 Re: Medication costs and purchasing strategies
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-26-05 20:38

Sue,

Generic minocycline works just as well as the expensive brand name, pelletized Minocin. If cost is a factor, you can feel confident that minocycline will do the job.

Best,

Meg

 
 Re: Medication costs and purchasing strategies
Author: Rick MacKinzie (---.dsl.pltn13.pacbell.net)
Date:   01-27-05 06:56

Hi everyone,

At Meg's request, here is my letter to the Insurance Company that worked for me . . . NOTE TO SARCINFO.COM - - - I HAVE EXCLUDED ALL PRIVATE INFORMATION . . .

Best of Luck!

Rick in Napa




TO: _ _ _ _ Insurance Company
Pharmacy Prior Authorization Department


From: Rick _ _ _ _ _ _ _


Re: Benicar Rx for Treatment of Sarcoidosis and request for
40mg #120 per month


I have been under direct supervision of Dr. _ _ _ _ _ _, M.D., F.C.C.P., for the continued treatment of Lung Sarcoidosis since 3/03, utilizing the Marshall Protocol as described at the sarcinfo.com site listed below. This request for an increase in the number of tabs from 90 per month to 120 per month is to cover those days when the herxheimer reaction is not being relieved with the normal Benciar dosage.

While following the protocol, I have progressed from total lethargy,
mild depression, extreme fatigue and continuous daily coughing
to . . .

Being able to return to work and most other activities with little to no problems as described above. And as long as I stay out of the sun and avoid Vitamin D in my foods, I feel like an almost cured person.

The Marshall Protocol is working for me, as well as others, without the use of steroids. Without it, I would return to the aforementioned problems and not be able to function nor provide for my family.

It is my hope that you will take the time to visit the site at sarcinfo.com, read the materials for physicians and understand the significance of the Marshall Protocol. Dr. Trevor Marshall (805 492-3693 or Trevor.m@y.. ) is also willing to discuss and/or clarify any part of the protocol with you.

Your assistance with my request, which is supported by my pulmonary physician would be greatly appreciated.

Sincerely,

Richard _ _ _ _ _ _

________________________________________


All supportive research and available papers can be located at:

http://sarcinfo.com/phorum/list.php?f=1

Papers for Physicians




Other papers . . .


Russian peer paper on Sarcoidosis . . .
Moved down to the bottom of the first page

http://www.icdc.ru/home.nsf/ae6ba61f2370d2c3c3256f4800499282/7c4adb204d59034bc3256f660035e4ce?OpenDocument


FDA Paper on Benicar . . .

http://www.fda.gov/cder/foi/label/2002/21286lbl.pdf


JOIMR paper on ARB Therapy . . .

http://www.joimr.org/phorum/read.php?f=2&i=53&t=53


JOIMR paper on Antibiotic Therapy for Sarcoidosis . . .

http://www.joimr.org/phorum/read.php?f=2&i=48&t=48


Angiotensin II and 1,25-dihydroxyvitamin D . . .

http://www.chestjournal.org/cgi/eletters/123/1/18


Jarisch-Herxheimer Reaction in Sarcoidosis Patients . . .

http://www.joimr.org/phorum/read.php?f=2&i=51&t=51

Sarcoidosis - Lung - Initial Blood - Jan03 1,25-D 47.9, 25-D 19.3, ACE 122; Began PhIII May 03/05 - Flushing . . . Last Blood May 05 1,25-D 23, D-25 12, ACE 89, D-Ratio 1.9 10/05 Living w/little problems . . .

 
 Re: Medication costs and purchasing strategies
Author: ola (---.energis.pl)
Date:   01-30-05 14:31

I have a big problem .Maybe somebody may help me.I decided to start Marshall protocol ,despite the fact there are no doctors who use MP in treatment in Poland.I am a doctor (dentist) so I decided to treat myself.Unfortunately it is not simple for the person ,who live in Poland.Benicar and Minocin are not accepted to use in Poland.I tried to order this drugs by Internet in USA but the Pharmaceutical Internet shops refused me to mail the itemsIhad ordered to Poland.They said it is against local customs regulations.I think it is unfair.Not only I can't find a specialist who helps me in treatment but also I can't det needed medicine.Maybe I should look for work abroad to be able to treat sarcoidosis.I am honestly heartbroken!

 
 Re: Medication costs and purchasing strategies
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-30-05 15:16

ola,

I don't know if you are aware that you have a countryman, wrotek, posting at MP.com. He is in the process of translating the Marshall Protocol information into Polish on his own website. Perhaps he can help you find a way for Benicar to be imported into Poland. This MP.com article, Where to purchase Benicar for self-pay members will help you find a source.

I'll send you wrotek's email address since he has it listed at MP.com.

Good luck,

Meg

P.S. When you have a minute, please add a signature line. This data, which will appear each time you post, greatly helps the moderators to answer your questions.

Meg Mangin, R.N.-moderator-sarcoidosis-nerve, skin and joints; started MP 12/02; average B/P 80/50; in phase three;still herxing mildly with 90% symptom resolution

 
 Re: Medication costs and purchasing strategies
Author: ola (---.energis.pl)
Date:   02-02-05 10:39

Thank you for your help. I have already stayed in touch with wrotek.I think we are the first in POLAND , who want to start MP . I have taken the first step :I have ordered NoIR sunglasses in USA and I have done blood tests for 1,25 D , 25D ,ACE.(not results yet)
Thanks again Ola

 
 Re: Medication costs and purchasing strategies
Author: John Dresser (---.ka.centurytel.net)
Date:   03-01-05 17:33

Sorry to post some bad news here, my previous report about suggesting Walmart pharmacy for the best price (you will have to negotiate as I have suggested higher in this thread) for Benicar has increased from $1.31 each to $1.40.
She told me she sold me my previous order for less than her cost and the new price covers the price increase. If that is true, $1.40 would seem to be as low as we might expect.
If anyone has a source with a better price in the last couple of weeks, please post here. Thanks, John Dresser

John Dresser
Sarc- Lungs dx (biopsy) 1985, pred 3yrs, Started MP 2.10.04 **1,25D=58.1 * 25D=18.1 **-phase 2- 6.1.04, phase 3- 9.16.04, strongest herxs 1st half phase 3. 4.18.05 **1,25D=13 * 25D=6 ** light herxing in last phase 3 abx combo 10/05

 
 Re: Medication costs and purchasing strategies
Author: B.Mustamu (---.upc-e.chello.nl)
Date:   04-20-05 16:21

Is it possible to get the Benicar and Myno without a prescription of the doctor? without insurance?
We cannot find a doctor willing to start the MP yet.

 
 Re: Medication costs and purchasing strategies
Author: Kevan Woodcock (---.pacificinsight.com)
Date:   05-24-05 08:29

To Rick MacKinzie
Hi
I assume you are in the USA? or are you in Canada? I am in Canada and about to submit my benicar receipts to my insurance company and so i wonder / hope that you may be in Canada and are referring to a Canadian insurance company.

cheers
kev

Sarcoidosis 11 years, Lungs, spleen, lymph nodes. Fatigue, joint and muscle pain, difficulty breathing. Feb 03 D25 = 67nmol/L, D1,25 = 80nmol/L, ratio = 1.19, ACE 80. Started MP on Diovan Feb 03. Switch to Benicar Nov 04. Now at MP3. General Improvements

 
 Re: Medication costs and purchasing strategies
Author: Sharon Houck (---.mo-stlouis0.sa.earthlink.net)
Date:   05-24-05 20:50

B mustamu:

Try searching on goggle.com or dogpile.com for benicar or openvas - that is the name it goes under in europe. I understand it is a lot more expensive to go that route. There is suppose to be a legal stink going on now about internet drug sales, so some sources may dry up, at least for shipment into usa. Of course you know it is not recommended we try this without dr. approval. There are so many things that can go wrong - hope you find a dr soon.

sarc chest lymph glands 1/10/05, started benicar 40 mg q8h 4/20/05 mino 100 mg qod-using noirs. D tests 5/10 - D,25 7 ng/ml, d 1,25- 49. started Phase 2 8/20. tests 11/7: d25,9 D1,25 - 27; tests 3/22/06 D25,5 D1,25 at 14 nt much herx

 
 Re: Medication costs and purchasing strategies
Author: Lottie (---.proxy.aol.com)
Date:   05-24-05 23:14

Kev,

Rick lives in northern California.

Hope you have no problems with your insurance.

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: Medication costs and purchasing strategies
Author: Lottie (---.proxy.aol.com)
Date:   05-24-05 23:25

B. Mustamu,

It is not at all recommended that you go on the Marshall Protocol without being under the care of a physician. While the moderators provide some assistance for you and your doctor, it is up to a doctor to follow your care.

If you haven't already read it, the information here from many who have gotten their doctors to help them may help you Advice on how to approach your doctor at the Marshall Protocol.com thread.

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: Medication costs and purchasing strategies
Author: jrfoutin (---.hsd1.ut.comcast.net)
Date:   06-27-05 13:53

Please help. Please check prescriptions before I buy.

Will need your support. Finally got Doc, although he's not happy about it, to do MP with me: "I know this disease kills. Have critical family responsibilities to earn income, sister dying of cancer and father dealing with Parkinsons--I'm their help and can't be while I'm ill. Please try it 1-3 years. If it fails, you can hit me with well-established comfort-zone therapies."

I'm looking for Minocycline or equiv. and Benicar without any extra goodies in it, right? Are these OK? Prescription looks like this: 28g Doxycycline (#30) and 40g Benicar w quil (#120)(not sure about spelling, could be gil).

I'd rather not pick up stuff I won't use, and Doc said insurance may not pay for MP drugs because treatment wasn't well-known.

Note: Have been wearing NoIR, living cave life and feeling a tad better because of it. Eyes are very sensitive to light and I use them to make a living.

 
 Re: Medication costs and purchasing strategies
Author: Meg (---.117.103.158.euc.wi.charter.com)
Date:   06-27-05 21:26

jr,

Doxycycline is not equivalent to minocycline. Brand names of generic minocycline are okay. They include Dynacin, Minocin, Vectrin. Dr. Marshall explains:

"Doxycycline is NOTHING like tetracycline and NOTHING
like minocycline. Although they are from the same chemical family, it
is a bit like saying that salt (NaCl) and Sodium Hydroxide (NaOH) are
from the same family. Even a subtle difference in chemical composition
can make a huge difference in efficacy.

MINOCYCLINE is the tetracycline CFS folks should be using, in my
opinion. Dr Burke Cunha, the guy who wrote the book on antibiotics,
explains why it is superior for tissue and CNS penetration in this
tutorial:
New uses for older antibiotics

If your prescription for Benicar say "with" then that indeciperable squiggle is probably HCT. You do NOT want to use this form of Benicar.

It's critical the you use the correct medication. I glad you asked before you purchased. Call doc and ask him to phone in the correct prescriptions.

Your insurance should pay for both these prescriptions because your doctor has ordered them. It doesn't matter what disease they are being used to treat. That is the doctor's business although an increasing number of insurance companies think they have the right to make that decision. If you need help getting your insurance company to pay, let us know.

Best,

Meg

P.S. When you have a minute, please add a signature line. This data, which will appear each time you post, greatly helps the moderators to answer your questions.

Meg Mangin, R.N.-moderator-sarcoidosis-nerve, skin and joints; started MP 12/02; average B/P 80/50; in phase three;still herxing mildly with 90% symptom resolution

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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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