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 The material here provides useful background, but much of it is now out-of-date.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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 Re: sarc and bone fractures
Author: Ken (---.proxy.aol.com)
Date:   05-27-02 09:32

Sarcoidosis Vasc Diffuse Lung Dis 2001 Mar;18(1):18-22

Cytokine and chemokine blockade as immunointervention strategy for the treatment of diffuse lung diseases.

Agostini C.

Padua University School of Medicine, Department of Clinical and Experimental Medicine, Italy. carlago@ux1.unipd.it

Cytokines and chemokines are essential components for the pathophysiology of sarcoidosis. In the last decade, evidence has accumulated indicating that most of the events that lead to the alveolitis, granuloma formation and tissue injury are regulated by these mediators and their receptors. Recently, information on the possible pathogenetic role of cytokines has been translated into the development of potent cytokine antagonists which have proved to be powerful means of controlling disease activity in some inflammatory diseases. Molecules capable of neutralizing tumor necrosis factor-alpha (TNF-alpha) are currently used in the clinical setting of rheumatoid arthritis and active Crohn's disease. TNF-alpha is one of most important cytokines in the pathogenesis of sarcoidosis: not unexpectedly, data suggest the real possibility of using anti-TNF strategies to treat refractory sarcoidosis. These data are preliminary and should promote further clinical trials to confirm both the efficacy and tolerability of anti-TNF agents when used in patients with sarcoidosis and other interstitial lung diseases which are characterized by an up-regulation of TNF-alpha expression in the pulmonary milieu. Blockades of other inflammatory cytokines are also expected to be therapeutic in sarcoidosis and other T-cell mediated diffuse lung diseases. In particular, therapies directed at neutralizing chemokines and other molecules which control trafficking and accumulation of immunocompetent cells are potentially more selective and attractive but require a priori knowledge of precise pathways regulating the inflammation state involving the alveolar and interstitial structures.

PMID: 11354543

 
 Re: sarc and bone fractures
Author: Caroline McGuirl (---.proxy.aol.com)
Date:   05-27-02 15:47

Dear Ken:
This may seem like a stupid question.....but what exactly is hypercalcemia and what does it present on the patient??? It mentioned bone fractures in title.....I have had several avuncular fractures while on Prednisone.....which didn't heal when off the drug.
Caroline

 
 Re: sarc and bone fractures
Author: Ken (---.proxy.aol.com)
Date:   05-27-02 20:01

(Also refer to article #20 below at bottom of this page)

The majority of patients with parathyroid disease have a non-familial enlargement of one or more parathyroid glands. There are four parathyroid glands, two on either side of the midline immediately adjacent to the thyroid gland. Each of these parathyroid glands is approximately the size of a pencil eraser and weighs about 30 milligrams. The parathyroid glands secrete a hormone called parathyroid hormone (PTH) which regulates the body's metabolism of calcium. When one or more of the parathyroid glands grows and enlarges for unknown reasons, it produces too much parathyroid hormone. This results in elevated calcium levels in the blood. The calcium stores of the bones can be adversely effected by this situation. This is particularly significant in postmenopausal women subject to osteoporosis.

The patient with a diagnosis of hypercalcemia and primary hyperparathyroidism is usually referred through their primary physician or a referring specialist endocrinologist. The patient with hypercalcemia will require exclusion of a number of differential diagnoses. In a healthy patient (who may or may not have kidney stones), hypercalcemia is usually associated with primary hyperparathyroidism, a disease of the parathyroid glands.

Other disease processes can cause hypercalcemia but are rarely associated with elevated serum PTH levels. Widespread cancer, certain lung diseases, over ingestion of certain vitamins (A & D) can produce hypercalcemia. Rare endocrine diseases (acromegaly) as well as certain familial disorders can also be associated with hypercalcemia. Most of these diagnoses can be quickly and cost effectively ruled out by evaluating certain blood values, which include serum calcium, chloride, and phosphorous levels as well as PTH levels. A chest x-ray is also important to look for signs of additional disease. A 24-hour urinary collection to determine calcium excretion may also be ordered. A referring physician or endocrine surgeon will want to see these values to establish the diagnosis of primary hyperparathyroidism.

In some patients, previous hyperparathyroid surgery has been performed. In that circumstance the endocrine surgeon may want to obtain specific testing for an enlarged parathyroid gland. A sestamibi scan uses radioactive materials in an attempt to locate the enlarged gland or adenoma. Re-exploration in the neck area may have a higher complication rate due to the scar from the previous surgery.

 
 Re: sarc and bone fractures
Author: Caroline McGuirl (---.proxy.aol.com)
Date:   05-28-02 07:15

Ken:
My internist feels for the glands in the neck area on a Physical Exam and I have blood work done routinely every 3 months if not more. Can the parathyroid glands be felt or seen being enlarged??
Caroline

 
 Re: sarc and bone fractures
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   05-28-02 13:50

Caroline,
Many doctors make incorrect diagnosis of thyroid problems in sarcoid patients, and then after surgery find the thyroid is actually healthy tissue, and the sugery was not necessary.

A sarc patient should always seek a second opinion before accepting any treatment for thyroid disorders. The symptoms are so very much alike, and are hard to tell apart.

..Trevor..
ps: I suspect your doctor is actually feeling for the size of your lymph nodes, not your thyroid.

 
 Re: sarc and bone fractures
Author: Cher (144.138.225.---)
Date:   05-28-02 22:36

Hi everyone,
The more I read in this forum the more I start to question. After reading about the possible genetic links with Sarcoid I wondered whether my brother & sister who were both diagnosed with Rheumatoid Arthritis may have a form of Sarc themselves. Now after reading this I realise that my sister has also been diagnosed with a thyroid problem many years ago & has been on medication to treat it. I think it was described as an under active thyroid. Maybe she should be tested for Sarcoid herself?
Cheers everyone & stay positive
Cher

 
 Re: sarc and bone fractures
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   05-28-02 22:46

Cher,
Take a look at this paper (it is fairly simple language) "Endocrine complications of sarcoidosis".

Hypothyroidism is the medical term for 'low thyroid activity'

But remember that not everybody will get the granuloma of sarcoidosis, even if they are genetically pre-disposed. They have to come into contact with a trigger. Slight mutations make a big difference. Some other immune disorder may be present, or even (most likely) no problems at all.

Nevertheless, the immune dysfunction associated with all these diseases can look like so many other disorders at first glance.

Print out that abstract and discuss it with the doctors.

..Trevor..

 
 Re: sarc and bone fractures
Author: Caroline McGuirl (---.proxy.aol.com)
Date:   05-29-02 15:46

Dear Trevor:
I didn't mention before but i have been treated for Hypothyroidism for a few years now...previous to any Sarcoidosis. I have been on Thyroid medication Levoxyl 150 mcg. daily. I have blood tests to monitor this condition every 3 months or more if needed.
I guess i will have to ask more questions about parathyroid and Vit D in future blood work studies.
Do you think an endocrinologist should be seen at this point? I have debated whether or not to make an appointment. My internist would be the one to make the referral out. We have discussed other specialists; and I did see a Rheumatologist...in fact two and neither one were very interested in my case.
I was lucky enough to visit with Dr. Robert Baughman of Cincinnati, Ohio and to speak with him about my case. He is wonderful and understanding and offered to send a letter to my doctors here in R.I. He did so with a copy to me. It is a 700 mile trip for me to see him and unfortunately there aren't many specialists here in my area (of Sarcoidosis).
I looked online through the Sarcoidosis Society also.
We have no support groups, no specialists in the area I live in. I am glad for this site, to be sure.
Thank you.
Caroline Mc

 
 Re: sarc and bone fractures
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   05-29-02 17:13

Caroline,
My PhD study was spent with endocrinologists so I think they are all wonderful people

Anybody with an above average (notice that I didn't say 'high') 1,25 Dihydroxyvitamin D3 should be able to be keep an endocrinologist busy. In your case, having been treated for hypothyroidism and then diagnosed with sarc, I would suspect there is a lot that an endocrinologist should be looking at putting right.

..Trevor..

 
 Re: sarc and bone fractures
Author: shelaghm (---.proxy.aol.com)
Date:   06-12-02 12:08

hi trevor - me again

the more i read this site the more i question what has been happening over the years before i knew i had sarcoid;

another question for you. can sarcoid cause the non-fusion of fractures? the reason i ask is that i was in a serious car accident sixteen years ago, when, among other things, i sustained a comminuted fracture to my right femur. as yet it has not healed properly. the leg is held together with the usual metalwork but xray films show that the healing is incomplete.

as you can imagine, this poses several problems, not the least of which is that i have periods of extreme pain which neither gp nor consultant seem able to alleviate. can the sarcoid be causing any or all of this

thanks again for your help

shelagh

 
 Re: sarc and bone fractures
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   06-12-02 12:16

No idea, Shelagh. I have not studied healing of limbs.

Although I would suggest you look at the bone wasting properties of the excess 1,25 Dihydroxyvitamin D3 manufactured in the macrophages. Ask your consultant if resorption might be hindering the healing

..Trevor..

 
 Re: sarc and bone fractures
Author: shelaghm (---.proxy.aol.com)
Date:   06-13-02 09:33


hi trevor

thanks for your response; i have read both papers you recommended; the three words i understood were very helpful!!!!!!!!

i will speak to my consultant when next i see him - if his three minutes worth of available time allows me to get the words out. i think in the long run i will put up and shut up about it - it has been a nuisance for so long now that i would probably miss the pain if it went away completely. and the rest of the problems that seem to accompany the disease are much more annoying than a little pain.

thanks for your time once again,. i appreciate it.

shelagh

 
 Re: sarc and bone fractures
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   06-13-02 09:46

Shelagh,
Ken has had 22 ribs break (at last count ) during the past few years. Several of them broke while he was sleeping in bed. Bone weakness in sarc is not a symptom that you should take lightly, IMO. (which means: In My Opinion). You cannot afford to ignore it, and if your doctor ignores it then you should be looking for a second opinion or a new doctor.

Sorry that the medical stuff seems complicated. It really is not complicated. Your doctors should be helping you with that. There is an online medical dictionary that is a big help.

Why not call your consultant or write to him? It is often so long between appointments. Send him a copy of the articles, and ask for his comments.

..Trevor..

 
 Re: shortness of breath
Author: Johnine (---.dialup.mindspring.com)
Date:   03-02-03 12:46

I was diagnosed with sarcoid through a lung biopsy in 1981. I went into remission and had only a couple of flares until 3 years ago when I contacted a bad virus that hospitalized me for 8 days. At this time my sarcoid returned and has been chronic every since. My doctor is very good and realises I have sarcoid, but when I tell him I am short of breath he tests my level and it shows I am getting from 92 to 99 percent of oxygen so he says it is all in my head. I don't agree and have been told that you can get sufficient oxygen, but sarcoid can prevent you from getting rid of the carbon monoxide so it can make you tired etc. Has anyone else had this problem or give some light to it. Thanks Johnine

 
 Re: shortness of breath
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   03-02-03 16:15

Johnine,

Welcome to sarcinfo. I would guess that all of us have at one time or another been told by our doctors that our symptoms are in our head. And I guess if you consider the powerful influence the secosteroid 1,25-D has on the brain, that may in a way be true. Fatigue is probably the most common symptoms of elevated 1,25-D.

We know how we feel and it's often lousy. The doctors have difficulty dealing with what they cannot measure. Look around this site, copy the tutorials for you doctor and see if you can get him to test your D-metabolites. That should initiate a discussion of alternative treatment that is safe and effective.

If you have any specific questions, be sure to ask.

Meg

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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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