Sarcoidosis Answers for Physicians, Nurses and Patients

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

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 The material here provides useful background, but most of this site is now out-of-date.

 

** Patient Tutorials **

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

  Click here to read "REMISSION IN SARCOIDOSIS"  

 How a Pathologist can see Bacteria causing Sarcoidosis 

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

 Weaning from Prednisone

 Protecting your eyes in Sarcoidosis

Vit.D and Calcium in Sarcoidosis

Hypervitaminosis D Symptoms    The SarcInfo F.A.Q.

Medical Abbreviations          CBC Radio Show

Protocol Phase 1-First 3 months

  

** Papers for Physicians **

Antibacterial Therapy induces Remission 

Implications for Autoimmune Disease 
(Here is Fulltext preprint)

Antibacterial mechanisms for ARBs 

Antibiotics in Sarcoidosis- The 1st Year 

Rationale for abx in Sarcoidosis 

1,25-D and Angiotensin II

"New Treatments Emerge.."

Jarisch-Herxheimer in Sarcoidosis

Vit.D and Calcium in Sarcoidosis

Protocol Phase 1-First 3 months

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


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 Can Prednisone help me? - what to consider
Author: Craig Moore (---.vc.shawcable.net)
Date:   07-21-02 13:54

>>>Notice from Admin - New data on steroids causing hip and joint failure are in a seperate thread, and may be read by clicking this link<<<

Hello:

I need to make a decision about taking my doctors advice and go on prednisone to treat my sarcoid. I am in the position of only ever having taken prednisone once before for a very short time in the early 80's to treat Bell's Palsey that we feel now was caused by sarcoid. I've been reading through the posts here and elsewhere and have been overwhelmed by the amount of varied opinions and "facts".

Could someone (Trevor?) please point me in the most relevant directions to help me make the decision to go on prednisone again as my doctor (respirologist) is asking me to do. He is very concerned that after looking at my latest x-ray and CT scan from the spring that my sarcoid is worsening.

It seems as though I contracted sarcoid in the early 80's and lived with it on my own (not very well) for 17 years. It took 12 doctors to figure out the problem and conclude sarcoid, and, some of these are very wise doctors. They say I am at "stage 2".

I am essentially healthy, thankfully. I am an ultra-distance runner and just completed my anuual 30 mile trail race. I foolishly attempted to do it twice in a 22 hour period but bonked big time after 35 miles. This is my idea of fun! I also have a friend that has been on prednisone for 30 years due to kidney problems so I am reasonably aware of his own little nightmare. Overall he's okay but can not get off the prednisone.

Thanks very much for your help,
Craig

 
 Re: Can Prednisone help me? - what to consider
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-21-02 14:10

Craig,
There are nearly 1000 messages on this system. It can be overwhelming! But read through as many as you can and you will find that, far from having "Bell's Palsy", facial palsy and partial paralysis and loss of feeling are common symptoms reported by many sufferers of sarcoidosis. All are due to high levels of the hormone 1,25 Dihydroxyvitamin D3 in your body. Get it checked.

Stage II is an early stage. This means the Docs are starting to see inflammation in the lung field of the chest Xray. It is still mild at this point, and can go to stage III or stage IV. None of these are fatal, in and of themselves, but you are unlikely to be able to keep up your distance running regardless of what treatment you opt for.

Read the thread on "has prednisone helped anyone" by clicking this link

It has just about all you need to consider already posted in it.

You can probably do a better job of looking after yourself than the "wise" doctors who took so long just to diagnose what was happening. Especially with the coming of the Internet. Knowledge is POWER.

..Trevor..
 
 Re: Can Prednisone help me? - what to consider
Author: Craig Moore (---.vc.shawcable.net)
Date:   07-21-02 14:29

Thanks Trevor. I will read through as much as I can without freaking out.

I'm also interested in a discussion or information about what diet is best to be on. Is there a difference regarding the effect of one's diet both on and off prednisone? I am big into nutrition and have done my best to have a healthy balanced diet for many years. It sounds like I should be very careful about vit. D supplementation as well.

Thanks again,
Craig
 
 Re: Can Prednisone help me? - what to consider
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-21-02 14:40

No, no, Craig you are missing the point. Prednisone therapy works by suppressing the cortisol normally generated by your body and replacing it with high concentrations of the corticosteroid, prednisone. At that point the prednisone controls your body. It does not just control your immune system, but also stops the generation of new bone (by suppressing RANK osteoblasts) and affects just about every endocrine system in your body.

If you decide to allow prednisone to take over the control of your body, any modification of diet you try to do will be simply fighting a rear guard action.

..Trevor..
ps: Yes I know there are books that try and minimize the risks and comfort patients undergoing prednisone therapy. They are all part of the problem, part of the myth, IMO.
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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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