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 The material here provides useful background, but much of it is now out-of-date.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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 Enbrel / Sinus / Sleep Apnea
Author: Mona (---.tnt1.santa-monica2.ca.da.uu.net)
Date:   03-14-02 10:11

Has anyone tried to get Enbrel for their treatment of sarcoidosis? It is a new drug that is being used to treat rheumatoid arthritis and psoriasis. It is basically a drug to treat imflammation, which is what sarcoid is. It is also called a tumor necrosis drug. I am trying to get a doctor to let me use it. Anyone know of anyone using it to treat sarcoid? Mona
 
 Re: Enbrel
Author: Admin (---.gtecablemodem.com)
Date:   03-28-02 10:37

Mona,
I am sorry I haven't responded earlier, I wanted to try and find some literature that might back up the effectiveness of Enbrel for treating the things that are worrying you.

I have been unable to find anything in the medical literature that would support the use of Enbrel in sarcoid patients.

However, the FDA recently issued several serious warnings about the TNF-alpha drugs which you can read by clicking here.

Personally, I abhor the tendency to prescribe drugs that were developed to treat other diseases on sarcoid patients in the belief "it can do no harm". This is not true. Sarcoid sufferers are a very small percentage of the population (10-50 per 100,000) and they experience side effects that would not be noticed even in the largest RA studies. This is exactly what the FDA is warning about - the drugs make patients susceptible to full-blown Tuberculosis.

I also found that Enbril (Etanercept) has been found to cause lupus
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11867114&dopt=Abstract

Why bother with these dangerous drugs? The cure is so simple and so safe...

..Trevor..
 
 Re: Enbrel / Sinus / Sleep Apnea
Author: betty (---.proxy.aol.com)
Date:   02-17-03 06:35

Hi.
My sinus are so bad right now I don't know what to do ,I'm so congested
and can never blow all my mucus out of my nose it is always draining down in my mouth. I have had sarcoidosis since 1992.what can you tell me to help me, it be so thick and bad tasting in mouth I have already had the sinus surergy once but twice on one side one was worse than the other.E-mail me back as soon as possible.


Betty, Thanks for being here to scat.
 
 Re: Enbrel / Sinus / Sleep Apnea
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   02-17-03 09:13

Betty,

I understand your pain and frustration. I endured over a year of sinus and face pain from totally obstructed sinuses. I lost most of my sense of smell, too. After I declined the sinus surgery, eventually my sinuses cleared and my sense of smell came back.

To ultimately get relief of the sinus problem, I would ask my doctor about using Benicar and antibiotics if I were you. Many patients are reporting Benicar clears the stuffy head and "socked in" sinuses, but you will probably want to read the information on this site and print out some of the research articles to share and discuss with your doctor. Don't assume that he/she knows about these new treatments (but how fortunate you will be if they do). I would also avoid vitamin D foods and daylight to get my vitamin D levels down. Have you had your vitamin D levels checked? If not, I would ask my doctor to order the blood work right away.

It may take a little while to get things turned around. In the meantime, I suggest you prepare steamy warm towels in the microwave twice a day and relax with your face covered by towels. I use two hand towels. Moisten them with water, then wring them out (like a rope) lengthwise. Put them in a bowl and microwave them for 2 minutes. Place the middle of the first towel under your chin, pulling the remainder up your cheeks and across your forehead. Lay the other towel across the first to cover your eyes and mouth, then relax until the heat is gone. This helped clear my sinuses.

Best wishes,
Belinda
 
 Re: Enbrel / Sinus / Sleep Apnea
Author: Betty (---.proxy.aol.com)
Date:   02-17-03 16:20

Hi
Again thanks for the surgestion for my sinus relief , Iam going to try it tonight before I go to bed. I also have hair lost starting .I don't know is
it from my sarcoid or not ,it's so bad that I'am going to have to get cut
off on Thursday to a very short length. I know it's not from taking meds,
besause I'am not on that many. do you have a input on this please reply.


Thanks for listen
Betty
 
 Re: Enbrel / Sinus / Sleep Apnea
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   02-17-03 17:06

Hi Betty,

Some, myself included, have reported less hair loss after getting the sarcodosis inflammation under control with ARBs and antibiotics. This was not a symptom I attributed to sarcoidosis until I experienced the pleasant relief from hunks of hair in my brush a few weeks after starting Benicar and Minocin and of course, avoiding Vitamin D and daylight. It seems sarcoidosis inflammation can affect the body in surprising ways. Although hair loss is one of the less distressing symptoms I was putting up with, I'm glad to add it to the list of those resolved.

Meg
P.S. Hair loss is attributable to either the microbes in the hair follicles or a high level of 12,5-D
 
 Re: Enbrel / Sinus / Sleep Apnea
Author: Pepi (---.cache.pol.co.uk)
Date:   02-20-03 13:48

I had hair loss too , although id never attributed it to sarc until right now...
For my sinus's I also used to use heat, in the form of a wheat bag(make sure it isnt too hot tho') the heat seemed to help clear me out ..

 
 Re: Enbrel
Author: cynthia zanchetti (---.oldh.broadband.ntl.com)
Date:   02-27-03 02:21

I'm interested in your view on the drug anti TNF (enbrel) as my consultant is considering putting me on this. I am currently taking methotrexate at 20mg dose. It has relieved several symptoms of my sarcoidosis e.g sinuses, lung function, cough, skin starting to clear, oedema, some joint pain, eyes..I also have liver involvement and worry about the long term use of any drug. I am monitored regularly but would like more information.
 
 Re: Enbrel / Sinus / Sleep Apnea
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-27-03 04:10

Cynthia,
The anti-TNF-alpha drugs are all less effective than the much safer (and cheaper) angiotensin receptor blockade with the ARBs. Your consultant would not have heard of this therapy, however, as Amgen is not pouring 100s of millions of dollars into marketing ARBs like they are pouring into the marketing of Enbrel.

The FDA recently issued warnings about Enbrel. These TNF-alpha inhibitors can be dangerous drugs.

Yet there is a simple cure for sarcoidosis. Many of us have already demonstrated its effectiveness.

You have been taking a Cytotoxic anti-cancer drug (Methotrexate) because it is relieving "several symptoms" of your sarcoidosis. Yet you know it has a reputation for slowly destroying the liver. To me this seems a poor bargain.

Your symptoms can be controlled by using ARBs and your Sarcoid inflammation can be knocked down by attacking its root cause - the CWD bacteria living in the granuloma. Neither of these two therapies has any significant risk. The ARBs are regarded as about as harmful as Aspirin. The antibiotics do have a bad reputation for side effects, the worst of which is something called Jarisch-Herxheimer Shock, which occurs when the CWD bacteria are killed.

Read all the material in the Patient Tutorials, and print out the "Papers for Physicians" for your consultant to read. It will take you a few weeks to digest all the information you will find here. Unfortunately it is all so very new that we haven't packaged it up into a simple format yet. Please don't be afraid to ask questions.

..Trevor..
 
 Re: Enbrel / Sinus / Sleep Apnea
Author: cynthia zanchetti (---.oldh.broadband.ntl.com)
Date:   02-27-03 04:43

Thanks for your response. Been on my own with this for a while so a little taken aback re. methotrexate. I knew it could affect my liver but was told I am on a safe dose and am strictly monitored due to secondary primary sclerosing cholangitis caused by the sarcoidosis. I suffer with an enlarged liver and spleen. At a recent hospital visit it was felt that there was some settling in size of both organs. So left there feeling more optimistic and doctors thinking of increasing my mtx dose to 25mg. Now not so sure.

I will read up on all the articles you mentioned and any new info will be appreciated. I am due to see my consultant at end of march re. start of anti TNF. So will hopefully be better informed by then.
 
 Re: Enbrel / Sinus / Sleep Apnea
Author: Caroline (204.184.54.---)
Date:   02-27-03 10:17

Hi Cynthia,

I wanted to relay my story of methotrexate to you. Not to scare you but to tell you what I encountered and to please be very careful of this drug.

I started on MTX for a six month trial and titrated to 20mg. per week toward the end of the trial. MTX did not help me in the least. What did happen is that it caused neuropathy in my feet. First I began with some vague numbness in the soles only. When it became apparent that the soles were truly numb, I asked my pulmonary doc if i should be taking folic acid in addition to MYX. At that time, I also advised her of the numbness. She told me to not take supplements but continue on MTX. The numbness crept up my calves. I already experience difficulty walking so numbness was a additional hurdle to deal with.

About two weeks later, the doc conceded that I was not helped and told me to quit taking it but I would have anyway. She again reiterated that I did not need folic acid.

I went back to my PCP with documents from this forum in hand. In addition to prescribing minocycline, he prescribed both B6 and folic acid. It took awhile, but my feet are no longer numb, my pulmonary doctor is history and my success story may be found in the "Antibiotics are Fixing Me" thread.

I am afraid for you, especially since you were unaware of the potential for liver damage from MTX. I hope you have been receiving regular blood draws to check liver function. I also hope you will give serious consideration to the potential damage this drug may cause. Please read and ponder the information here and the protocol set out that has been giving remission to so many of us. If you have questions, ask and someone will provide an answer quickly.

I received my sarc. diagnosis in 1996, although I know I had sx. much before then with multi-organ involvement. There is hope and wellness to be found here.

Caroline
 
 Re: Enbrel / Sinus / Sleep Apnea
Author: cynthia zanchetti (---.oldh.broadband.ntl.com)
Date:   02-27-03 15:27

Caroline

Thanks for your information and concern. I'm really glad I came on to this site however a little overwhelmed as there seems to be so much info. available. (which is good!). I've got a lot of catching up to do!!

Fortunately I was prescribed folic acid @ 5mg along with my MTX and cannot get one without the other.

Like you I believe I had symptoms long before an actual diagnosis. Due to liver involvement I suffered with intense itching all over my skin, eyes, feet etc..been on allsorts of medication but not fully alleviated although intenseness has lessened with strong antihistamines.

Only last week i started to experience a tingling sensation in my left hand and wrist. I ignored the symptoms putting it down to joint pain associated with the sarcoidosis. ( I remember thinking will I not get a break from this thing!). It spread to my shoulder and at a routine check up i mentioned it to the rheumatology sister monitoring my MTX. I was given an injection of cortisone steroid into my wrist. It appears to be getting better. However I'm not so sure now what is causing what!! Also seems to be so many contra indications with different medications.

Hopefully once i've read through recommended pages I will discuss with my gastroenterologist and sarcoid specialist.
 
 Re: Enbrel / Sinus / Sleep Apnea
Author: Kevan Woodcock (---.pacificinsight.com)
Date:   02-28-03 12:13

Hi
I have just started minocin and imeadiatly after the first tablet my sinus clogged up. I also had other flu like sysptoms which is typical of my sarcoid. I was wondering if i can take decongestants and pain killers such as advil for this sinus pain. In fact i have just started doing this but i will stop if it is effecting the function of the minocin.

regards
kev
 
 Re: Enbrel / Sinus / Sleep Apnea
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-28-03 12:19

Kevan,
Pain killers are OK. Brown suggested his patients could even use NSAIDs if necessary. It will only be for a while ( a couple of weeks max, usually). Even if the NSAID does detract a little from the Minocin you are still making headway.

..Trevor..
 
 Re: Enbrel / Sinus / Sleep Apnea
Author: Caroline (---.win.org)
Date:   02-28-03 21:13

Cynthia,

I forgot to mention that once I was off MTX and taking rx. strength folic acid, I also took prescription strength B6. Once the numbness resolved I quit taking both B6 and folic acid. (MTX if a folic acid antagonist).
In 'normals' too much B6 may also cause neuropathy.

Steroid injections will almost always make the area injected 'feel better'. It is also very damaging to your body. Your story sounds so familiar, you have numbness creeping up an extremity. The numbness which spread from the soles of my feet up to my calves, almost to knees was a direct cause of MTX. Did the prescribing doctor tell you to discontinue MTX? [or] just give a steroid injection? That injection did not cure anything, it just covered it up like a band aid on a 'boo-boo'.

I know this site is very overwhelming to new members. Read the patient tutorials first, they are at the top. Please ask questions in areas that you don't understand. Anything in bold face type is a link. There is also a "search" function at the top.

Caroline
 
 Re: Enbrel / Sinus / Sleep Apnea
Author: Kenneth L. Collins (216.248.140.---)
Date:   04-04-03 04:57


I have been on the C-pap machine for 5 years. These last two years I have developed a real problem of shortness of breath. Will using the c-pap cause SOB?
 
 Re: Enbrel / Sinus / Sleep Apnea
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   04-04-03 09:04

Kenneth,

IMO, it is unlikely that your increased dyspnea (shortness of breath) is related to your use of the C-Pap machine. As I understand it, this device mechanically forces your airway to stay open with positive pressure air. This should promote restful sleep if you've been awakened by sleep apnea due to a constricted airway.

It is more likely that your deterioration is caused by another underlying condition. What was your doctor's answer to this question?

Meg
 
 Re:Enbrel
Author: Tina (---.proxy.aol.com)
Date:   05-16-03 15:48

Hi!
I was hoping to get some information on Enbrel. I have Sarcoidosis and have been taking predinsone and plaquenil. In the beginning, I felt so good from the medication. I recently have been feeling worse so, my Dr. suggested taking Enbrel. I do not know much about this medication and I need to know about any side effects. And if anyone presently on this medication??Thanks in advance.

Tina
 
 Re: Enbrel / Sinus / Sleep Apnea
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   05-16-03 18:55

Tina,

Welcome to SarcInfo. Your sad story is all too common around here. Prednisone suppresses the immune system and at first, unless you experience its nasty side effects, Prednisone calms the inflammation of sarcoidosis and you feel lots better. So good that at least one doctor wonders why it isn't a street drug. But when the immune system is suppressed the bacteria that are the root cause of sarcoidosis are allowed to grow. After awhile the immune system suppression is no longer enough to quell the inflammation. If you are able to wean of this dangerous drug your symptoms usually return, often worse than before. One study concludes that " corticosteroids contributed to the prolongation of the disease by delaying resolution". You can learn more about steroids and sarcoidosis by clicking on the appropriate links at the bottom of this page.

Placquinil is hydroxychloroquinine, a drug that is used to fight malaria. It is sometimes useful against the microbes that cause sarc but somewhere under 10% of the time. The doctors prescribe it because they think it has some unknown ability to suppress the immune system. It has some serious side effects, unlike the safer antibiotics that Trevor recommends.

Enbrel (etanercept) is drug that suppresses the immune system by inhibiting tumor necrosis factor-alpha synthesis. The anti-TNF-alpha drugs have potentially serious side effects. You can read about the FDA warnings on the the thread "Warnings:Enbrel, Remicade, Pentoxyfylline, Thalidomide." There is also information about Enbrel in the previous messages of this thread. Just scroll up and start reading from the top.

Please take some time to read the patient tutorials and papers for physicians located at the top of this page. Also read the starred threads. You can use the search feature to find information about other specific topics of interest to you.

I hope you will see that there are safer, effective medications you could be taking to put your sarcoidosis into remission.

Best regards,

Meg
 
 Re: Enbrel / Sinus / Sleep Apnea
Author: JC Miller (---.nash01.tn.comcast.net)
Date:   05-17-03 11:04

I don’t know if this will help anyone but a few years ago I went though 5 sinus surgeries in a two year period and still today I have to take allergy and sinus medicine. I use Zurtek and flonase together and it seems to help better than any thing I have ever used. I also have Sleep Apnea but I don’t have to use a bypap. Maybe the info will help.

JC
 
 Re: Enbrel / Sinus / Sleep Apnea
Author: lisa (---.proxy.aol.com)
Date:   06-06-03 19:05

I have had 4 sinus surgeries in less than 2 years. I was dx with sarcoid in the sinuses after the 2nd surgery. To help keep my sinuses cleaned out now I use a water-pik with a warm salt water solution. I seems to do the trick so far.

Lisa
 
 Re: Enbrel / Sinus / Sleep Apnea
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-06-03 21:53

Lisa,
If sarcoid inflammation has been found in a biopsy of your sinus tissue, it is certain that the bacteria are also growing elsewhere in your body, and will eventually give you trouble elsewhere.

Rather than focus on the place where the bacteria are currently making themselves most obvious, I would suggest that you might look at fixing your sinus problems with minocycline, and then you might not need any more of those surgeries.

..Trevor..
 
 Re: Enbrel / Sinus / Sleep Apnea
Author: bpeck (---.dialup.mindspring.com)
Date:   06-08-03 19:53

Trevor:
Could you clear up a technical point please?

On a previous post it was mentioned that "Enbrel (etanercept) is drug that suppresses the immune system by inhibiting tumor necrosis factor-alpha synthesis. "

This statement differs slightly from the insert from the drug:
What about TNF-beta?

From the drug sheet insert from Enbrel:
" Two distinct receptors for TNF (TNFRs), a 55 kDa protein and a 75 kDa
protein exisit naturally as monomeric molecules on cells surfaces and in soluble form. Biological activity is dependant upon binding to either cell surface TNFR. Enbrel is a dimerc soluble form of the 75Kda TNF receptor that can bind to two TNF molecules."...
" ENbel inhibits the binding of both TNF-alpha and TNF-beta to cell surface TNFrs, rendering TNF biological inactive."

So, I take it this means Enbrel shuts down all TNF activity. (Blocking TNF alpha and Beta.)

Thanks,
Barb
 
 Re: Enbrel / Sinus / Sleep Apnea
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-08-03 20:05

Barb,
TNF-alpha is the cytokine which is released in the Th1 immune response of sarcoidosis. What role it plays is still unknown to the pundits
"TNF-alpha seems to play a major pathogenic role in .. chronic immune-mediated inflammatory diseases"

It is not produced if you effectively block Angiotensin II from binding at a Type 1 receptor. Which is what frequent Benicar dosing does.

So, even though the pundits are confused, I am not.

However, I haven't yet found anything I regard as definitive on the differential role of TNF-alpha and TNF-beta.

..Trevor..
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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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