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 The material here provides useful background, but much of it is now out-of-date.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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 Dry Eye Syndrome caused by Prednisilone?
Author: Katey (---.cache.pol.co.uk)
Date:   07-13-02 08:52

Whilst withdrawing from prednisalone a situation of very dry eyes that responded well to Hypermellose, has now become Dry Eye Syndrome and is deteriorating badly. I fear losing my sight.

I am having so many other symptoms flaring up since starting to taper down and life, it has to be said, it at an all time low.

Can anyone go through these symptoms with me and give me some ideas...which might stop, which can improve, which are NOT to do with steroid withdrawal???

And if I may make so bold, thank you Trevor for giving me this site. I have no idea what 'sarcoidosis' is and cant find my way around here to discover it...sorry, I am not good with computers.
All help appreciated greatly.
Katey.

 
 Re: Dry Eye Syndrome caused by Prednisilone?
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   07-15-02 16:43

Katey,

Dry eyes are a common symptom in sarcoidosis. How did you determine your dry eyes are caused by prednisolone?

Belinda

 
 Re: Dry Eye Syndrome caused by Prednisilone?
Author: Caroline (---.win.org)
Date:   07-15-02 20:53

hello katie,
i also have dry eyes from sarcoidosis. i had this well before beginning any steroids. i have taken oral prednisone and solumedrol IV's. i use one contact for correction and use drops throughout the day to help the dryness. (boston brand rewetting drops). even when i am wearing my glasses, i am troubled with dry eyes which are sometimes a bit itchy.

have you tried any OTC or doctor rx'd remedies? there are quite a few OTC products that might be of some help until your doc can prescribe something.

take care, caroline

 
 prednisalone did not work?
Author: diane moorcroft (---.liv.cvx.blueyonder.co.uk)
Date:   04-05-04 03:10

i have had colitis for four years now ,yet a medication has never been found that settled my colitis without any sideaffects i.e diarrohoa and vomiting ,sometime for weeks on end.On friday i visited aintree hospital to see professor roedds and he has asked me to try a new drug.I CANNOT REMEMBER THE NAME OF THE MEDICATION AND AM HOPING YOU CAN ASSIST ME. I would also be grateful if you could tell me if i can use dioralyte whilst on these medicines to help me but the salt back into my body following a 2 week bout of diarrohoa.



I WOULD BE GRATEFUL IF YOU COULD REMPLY TO MY QUESTION TODAY IF POSSIBLE ,EVEN IF IT IS TO ANSWER THE DIORALYTE QUESTION.


THANKYOU SO MUCH
DIANE

dm001i0467@b..

 
 Re: Dry Eye Syndrome caused by Prednisilone?
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   04-05-04 06:55

Hi Diane,

Welcome to SarcInfo. Do you also have sarcoidosis? I'm sorry that you have been so ill with colitis. There may be many new medications for colitis so I could not guess as to which one the doctor wants you to try. And it is impossible for us to know if it's okay for you to use dioralyte. You really need to call your doctor and ask him these questions. That's what he gets paid for.

Take care,

Meg

 
 Re: Dry Eye Syndrome caused by Prednisilone?
Author: SueUKra,ss (---.no-dns-yet.ntli.net)
Date:   04-05-04 15:43

Hi Diane,

You can contact your GP who will get a letter from Professor Rodds should say what he wants GP to prescribe or suggested you take,will take a few days or phone hospital and ask to speak to the Professors secretary and explain you can't remember what he suggested she can look up your hospital notes.

You don't say what medications you are on,this is mainly a sarcoidosis website and many are using antibiotic therapy ,are you concerned that Dioralyte can be taken with what medications?

Dioralyte can be taken by most people and children (it contains,salt,potassium and sodium and sodium citrate and aspartame) it just replaces what the body has lost due to diarrhoea.
You can always phone a nice chemist if you are concerned.

Best Wishes
Sue

 
 Re: Dry Eye Syndrome caused by Prednisilone?
Author: SueUKra,ss (---.no-dns-yet.ntli.net)
Date:   04-05-04 15:58

Hi Katey,

I am also very slowly reducing my Prednisolone I am now on 5.5mg .

I have dry eyes due to RA and Sjorgrens .My eyes have become more dry since dropping to this dose.
I am on antibiotic therapy are you? You should be pretty stable before reducing Pred as the antibiotic can penetrate more and herxes increase I believe.

You don't say what else is flaring? ?

What dose of Pred are you on and how are you reducing ,what dose etc .
I would love not to take Pred have been on it 3+ years. But as it was probably affecting the inflammation in your eyes it may be a sign that you have decreased too much or too quickly I have learn't the hard way...........
Sometimes you need to go back to the Pred dose you were on and always try to deal with the underlying cause of the dry eyes.

Who has said you will lose your site ? Who checks your dry eyes?

Take care and try not too worry, feeling stressed won't help your body adjusting to less Pred

PS hypromellose I found evaporated very quickly when eyes were very bad I found Viscotears much better it's a sort of gel . Then theres always gunky lacrilube ointment for nighttime

Best Wishes
Sue

 
 Re: Dry Eye Syndrome caused by Prednisilone?
Author: Admin (---.vnnyca.adelphia.net)
Date:   04-05-04 17:07

Sue, and everybody:
The most important single step you can make to protect your eyes is to get Benicar/Olmesartn blockade in place. If you have eye problems you are crazy not to be using an ARB.

..Trevor..
ps: The ARB also makes weaning from prednisone a breeze (well, a lot easier, anyway..)

 
 Re: Dry Eye Syndrome caused by Prednisilone?
Author: florence warnock (---.server.ntli.net)
Date:   07-12-05 04:16

have bletheritis i take viscotears also celluvise they do not help,i am . in terrible pain .and it is getting worse

 
 Re: Dry Eye Syndrome caused by Prednisilone?
Author: Lottie (---.proxy.aol.com)
Date:   07-12-05 09:57

Florence,

This website is set up to deal with patients with Sarcoidosis. Do you have Sarcoidosis, or any other diagnosis besides the eye condition?

Please let us know more about your health. It is possible that we can help you.

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

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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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Sarcoidosis


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