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 The material here provides useful background, but most of this site is now out-of-date.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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 Full Body Pet Scan...
Author: Elizabeth (---.atlantic.net)
Date:   04-29-04 14:04

Hi Trevor

I was dx with Sarc about a month ago after a Mediastinal biopsy. This was done after having a full body PET scan which showed quite a bit of activity throughout my body, which at first they thought was quite a bit of cancer!
I have been told that the sarc is only in my lungs, which makes me wonder why all this other activity is present in my body. When I asked for an explaination ... well there was none.. Could this all be contributed to sarc?

This is what the findings of the PET scan were. Maybe you can read it and make some kind of sence out of it.

PET scan is markedly abnormal with multifocal hypermetabolic abnormalities identified throughout the chest, abdomen and pelvis. There is evidence of extensive hypermetabolic activity identified in the mediastinum involving the paratracheal, prevascular, subcarinal and azygoesophageal recess region. The findings are compatible with extensive mediastinal lymphadenopathy, having a maximum SUV ranging up to 13.5. Paratracheal adenopathy has a maximum SUV of 9.6 with more sighificant hypermetabolic activity identified in the subcarinal and right azygoesophageal recess region, having a maximum SUV of up to 13.5 There is also evidence of abnormal hypermetabolic activity in the hilar regions bilaterally. There are multiple small hypermetabolic foci identified in both lungs with predominant perihilar distribution of hypermetabolic lesions. No axillary lymphadenophthy is identified. There is hypermetabolic focus in the right mid-cervical region suggesting right cervical lymphadenopathy. No other evidence of cervical lymphadenopathy is identified.
The liver demonstrates diffuse heterogeneous activity with numerous foci of hypermetobolic activity through both lobes of the liver worrisome for hepatic metastatic disease, and these demonstrate maximum SUV ranging up to 6.6 within the liver. there is a hypermetabolic mass-like area identified within the mid-abdominal region localizing to the area of the pancreatic head or peripancreatic region suggesting tumor mass or metastitic lymphadenopathy. This has a maximum SUV of 9.9. There is also evidence of mesenteric adenopathy in the upper abdomen. There are several areas of hypermetabolic activity compatible with periaortic retroperitoneal adenopathy. Extensive significantly hypermetabolic abnormalities are present in the lower pelvis bilaterally. These have elongated configuration along the lateral pelvic sidewalls and could be related retention of activity within the sistal ureters or possibly represent bilateral iliac pelvic adenopathy.
there is evidence of widespread skeletal metastitic disease with multiple hypermetabolic lesions involving the thoracic and lumbar vertebrae, bony pelvis and proxical femurs bilaterally.

I know this is a bunch of big words, I havent a clue why all this stuff showed up on the PET scan if it means nothing!

Thanks for all you are doing to answer our questions. But most of all for listening..
Elizabeth
 
 Re: Full Body Pet Scan...
Author: Admin (---.vnnyca.adelphia.net)
Date:   04-29-04 14:34

Elizabeth,
Sarcoidosis is a systemic disease. It is totally incorrect to say the sarc inflammation is only in your lungs. The PET scan revealed otherwise.

In fact, as the antibiotic therapy puts you (slowly) into remission you will feel pain and other strange symptoms from many of the areas that are identified in the PET report. Most sarc patients are amazed by how much this disease has spread throughout their body before it was diagnosed.

I wish more folks would be given PET scans rather than CT or MRI. Positron Emission Tomography is the best available imaging technology, and it images the metabolic activity within the body rather than just the shape of water-rich structures (organs and tissue), as MRI and CT scanning do.

But the PET scanner is expensive, and many physicians don't like to believe what it tells them. I suspect your pulmonologist, for example, does not want to have to face up to your sarcoidosis being systemic.

In about 1994 I visited Hamamatsu Photonics, in Japan, where they had been using some high-power computer modules I had designed. Their prototype PET scanner had its own building, including a cyclotron for making the radioactive 'sugar'. That was produced (by the cyclotron) in a room right adjacent to the scanner (and the patient). The computing power to image the weak particles emitted by the sugar as it was being metabolized inside the patient was really quite incredible, for the early 90's. PET is amazing technology. And it works.

So now it is time to sit down with your PCP and talk over the "long words" and explain to him that there now really is a way to beat this disease, and he/she can help you do it

..trevor..
ps: print out the phase 1 protocol for Doc. It is in the "Papers for Physicians" at the top of the page...
 
 Re: Full Body Pet Scan...
Author: Carolyn Inabinet (---.ph.ph.cox.net)
Date:   05-12-04 07:28

What speciality was the doctor who ordered the PET scan. And the reason why? Probable diagnosis of sarcoidois?

Carolyn
 
 Re: Full Body Pet Scan...
Author: Elizabeth (---.atlantic.net)
Date:   05-18-04 07:04

The Dr. that ordered the PET was my pulmonologist, he ordered the PET scan only after 2 questionable CATs. he at that time was thinking that I had Lung Cancer.
 
 Re: Full Body Pet Scan...
Author: Carolyn Inabinet (---.ph.ph.cox.net)
Date:   05-18-04 07:44

Trevor:
My limited understanding is that the PET scan shows metabolic activity? Can 1,25-D be considered a "marker" for granular formation? I understand that it takes years for granulomas to appear dense enough to appear as calcified nodes or dense nodular opacities. Before this process is 'solidified', would the PET scan reveal probable locations of this ongoing process?

Carolyn
 
 Re: Full Body Pet Scan...
Author: Carolyn Inabinet (---.ph.ph.cox.net)
Date:   05-18-04 13:15

Trevor:

In response to my question of a granuloma formation in the oral mucosa, my ENT is talking to the radiologist(s) to see if CT enhancement along with a PET scan would assist in detailing a granuloma in the tissue. This would be a surgical marker in the oral mucosa in the event of surgical repair of the fistulae - if necessary, AFTER your protocol. My concern is surgery could miss this problem in the tissue since we have not been able to image "it" with CT or MRI.

He was interested in and open to your information - has all of the "papers for physicians" and understands your theory. He would not necessarily monitor the Marhsall Protocol, but agrees this would be a prudent way to proceed at this time. Even before tissue biopsy or surgical culture or a major surgical process in the area. He has talked with my rheumatologist - who called this morning.

Can you give me any more specifics about PET scanning? I am assuming you are correlating the high 1,25-D metabolic activity with areas that show in the PET scan as possible locations that would eventually develop granuloma because of the ongoing infectious process of sarcoidosis?

Carolyn
 
 Re: Full Body Pet Scan...
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-18-04 13:26

Carolyn,
As I said above, a radioactive marker is combined with a metabolite, usually glucose, and the degree of release of positron energy is supposed to be an indicator of the usage of glucose in that area.

All imaging is imprecise and only a crude approximation of the inflammatory process. I think of it as a crutch for folks who are not able to visualize the progress of this disease by bloodwork alone - the same folks who failed to find either the pathogenesis or the cure.

..Trevor..
 
 PET scan appears to be cancer
Author: Marilyn Verhoff (---.woh.rr.com)
Date:   07-06-04 15:15

Dear Dr.,

Since the beginning of this year I have had a urinary tract infection, a kidney infection, and cellulitus in my left leg. The doctor ordered a CT scan in February which showed a nodule in my right lung apex. The scan report suggested a follow-up scan in May. The May scan showed granuloma clusters appearing all over my lungs. A PET scan was then ordered and the doctor's diagnosis was TERMINAL CANCER and ordered a needle biopsy, then he would determine treatment. The biopsy revealed no cancer but sarcoidosis. I am now concerned that I may still have cancer elsewhere in my lungs that the biopsy did not find - since the doctor had told me before the biopsy report came back that he was positive that I have cancer. Should I request another biopsy or does sarcoidosis look so much like cancer on a PET scan that the doctor could make such a mistake?

Secondly, I do not know what to do now. The doctor suggests that I take prednisone with all its side effects or wait to see a specialist at Ohio State. My appointment at Ohio State is not until September. I have no breathing problems or coughing. Should I start taking prednisone now or wait to see the specialist at Ohio State?

Thank you for your time

Marilyn
 
 Re: Full Body Pet Scan...
Author: Kas (---.mtnk.rnc.net.cable.rogers.com)
Date:   07-06-04 16:31

Yes, PET scans can cause doctors to think you have cancer.

I lost my spleen because some of the top docs here and in the US ( Cleveland Clinic) felt sure I had lymphoma. So, instead of doing a bronchoscopy on me, they went for my granuloma filled spleen and to all their surprise, the biopsy showed non caseating granuloma and by exclusion, sarcoid. Amazingly, my liver, which had shown raised enzymes for a year at that time, was clear on the PET scan.
 
 Re: Full Body Pet Scan...
Author: Meg (---.115.72.119.static.euc.wi.charter.com)
Date:   07-06-04 17:05

Hi Marilyn,

Welcome to SarcInfo. Trevor said in a previous post in this thread "All imaging is imprecise and only a crude approximation of the inflammatory process." The doctor who told you that you had cancer was making an educated guess after he saw your PET scan based on statistics. Since a biopsy is the gold standard and yours revealed sarcoidosis, I think you can relegate that cancer diagnosis to unfortunate history.

Both of the choices you were given regarding treatment involve prednisone since that is also, undoubtedly, what the Ohio specialist will order. Not only does prednisone have immediate side effects, it has dire consequences with long-term use. And long-term use is usually guaranteed because the drug is so addicting. Even those who wean from it eventually use it long-term because it causes relapses. I'll email you more detailed info about prednisone and sarcoidosis.

But you have a real choice now in the Marshall Protocol. It is safe so, unlike the toxic standard treatments, you do not have to wait for life-threatening symptoms. You can begin it now and start right away to put your sarcoidosis into remission.

Let us know if you have any questions that are not answered in the patient tutorials, papers for physicians, links or starred threads on this site.

Meg
 
 Re: Full Body Pet Scan...
Author: Barbara Siler (---.135.202.68.cfl.rr.com)
Date:   01-18-05 18:33

Can someone please help me with a PET scan??? I am a little confused as to what the possibilities are if a PET scan shows metabolic activity.

I underwent a full body PET scan recently due to some lymph glands in my neck and a lump that had been there for 2 years to include minor problems such as minor night sweats and facial pressure. A FNA of a node in the neck came back non-diagnostic, so they did a PET scan.

The PET showed no problem in the neck but multiple areas of increased metabolic activity in the spleen. A CT scan 6 months ago of the abdomen showed decreased attenuation in the liver relative to the spleen. A CT of te abdmen now shows lesions in the spleen.

Any thoughts? I am awaiting a talk with my doctor in a couple of days and am confused if it is sarcoidosis or lymphoma or something else. What are the possibilities???

Barbara
 
 Re: Full Body Pet Scan...
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-18-05 18:59

Hi Barbara,

Welcome to SarcInfo. It sounds like you do not yet have a definitive diagnosis. Many of us got a false diagnosis of lymphoma before sarcoidosis was diagnosed. Sarcoidosis is a systemic inflammatory disease that can affect any part of your body including lymph nodes. You can check this list of hypervitaminosis-D symptoms to see if you symptoms fit the sarcoidosis picture.

However, you doctor can do a simple blood tests and assess your D-metabolites to determine if your symptoms are due to Th1 inflammation. If so, a presumed diagnosis of sarcoidosis can be made based on clinical signs. Then the only safe and effective treatment for sarcoidosis, the Marshall Protocol, could be started.

Expensive tests like CT scan and PET scan may pinpoint areas of inflammation but they will do nothing to alter the course of the disease. Let us know if you have any questions about the Marshall Protocol that are not answered by the patient tutorials, links, papers for physicians or threads on this site. You can also find easy to understand explanations and support on our sister website, marshallprotocol.com.

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: Full Body Pet Scan...
Author: Lorraine (---.gnv.bellsouth.net)
Date:   01-19-05 21:05

HI, I havd a pet scan and do not understand some of the lingo....First let me tell you I have stage 4 colon cancer that spread to my liver....on this new pet scan they indicate a new large slightly lobulated area of hypermetabolic activity centered in the caudate liver lobe. What does thi mean? Then also there are two or three small foci of mild hypermetabolic activity in the periaortic region, possible representing periaortic adenopathy...What does this mean? no other abnormal foci of abnormal metabolic activity are seen in the abdomen....I would appricate your help and any suggestions......thanks Lorraine
 
 Re: Full Body Pet Scan...
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-19-05 21:44

Hi Lorraine,

Welcome to SarcInfo. Our website is designed to help people recover from sarcoidosis. Some of them have had PET scans to locate inflammation. Your doctor is your best source of information as to what your PET scan means.

I hope you well get well soon.

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: Full Body Pet Scan...
Author: judy osmon (---.friendlynet.com)
Date:   02-08-05 17:06

My daughter sent me this site. I had a cough for 2 yrs and the doctor...finally ordered a chest xray. It showed an enlarged node and several others that were slightly enlarged. Then I had a CT scan which corraborated the chest xray and the impressions given were that the nodes could be reactive, neoplastic, lymphoma or sarcoid. I was told I needed to see first a cancer specialist and if needed then, a lung specialist. The cancer specialist ordered a PET scan. I was told it would be definitive.
It apparently wasn't.
I had a whole body scan. THe findings were: images of the soft tissues of the neck demonstrates no evidence of abnormal FDG uptake. Normal physiological activity is seen in the tonsils and the larynx(note: my tonsils were removed when I was 8). THere is no evidence of abnormal uptake within the supraclavicular nodes or witin the axillary region. Within the chest, however there are multiple foci of increased hypermetabolic activity corresponding to many of the nodes and masses seen of the recent CT scan. There is FDG uptake measuring approximately 2.6 SUV values within the enlarged right paratracheal node seen on the recent CT scan. In addition there is abnormal FDG uptake seen within the left infrahilar nodes seen on the CT scan. SUV values measuring appox 2.5. In addition there is increased FDG uptake within some of the subcarinal nodes measuring 2.1suv. ALso a small hypermetabolic foci seen within some smaller hilar nodes. I do not see definite abnormal uptake within the pung parenchyma itself. No abnormal uptake in teh liver or spleen. No abnormal retroperitoneal activity. Within the pelvis, normal physiological uptake within the bladder and kidneys. No abnormal uptake in teh osseou structures. Some incre in teh preaortic nodes. SUV 1.8. ALso a small increase in the small hilar nodes to the right of the midline.
The finding was that withthe uptake and multiplicity of the enlarged nodescontemplation of histological confirmation may be needed . May be reactive, neoplastic, lymphoma or sarcoid
No diagnosis...I had some extra blood work and was told it was fine. A hematology lpl and a chemistry lpl
Does any of this tell you anything? Would it have been smarter of the doctor to just have biopsied a node? I was given a choice of a biopsy now or to wait. I chose to wait.
Thank you in advance for your help.

Judy
 
 Re: Full Body Pet Scan...
Author: Caroline (---.dsl.stlsmo.swbell.net)
Date:   02-08-05 21:16

Hi Judy,

Welcome to SarcInfo. I cannot interpret your PET scan, your physician is who should explain the results. If you and your doctor suspect sarcoidosis, I can suggest a simple blood test of your D metabolites. You may wish to discuss this with your physician. How Does Doctor Measure My D Metabolites. Obtain the actual numbers as opposed to being told "everything is normal". Post the results here for help with interpretation. Many of us here have been told that cancer must be ruled out, before we were diagnosed with sarcoidosis. Those of us with sarcoidosis have disregulated D Metabolites, your results may be indicative of TH1 immune disease.

Please read this and see if you have any of these symptoms in addition to what you have listed in your post. Hypervitaimntosis D Symptoms.

This is new research and your doctor may not be familiar with it. He or she may wish to visit our sister site which has a discussion area restricted to Professional only. Private Section For Professionals.

Of interest also is the upcoming Conference, scheduled March 12 and 13, "Recovering from Chronic Disease". The keynote speaker is Dr. Kiley of the National Heart Lung and Blood Institute (NHBLI) at NIH (National Institute of Health). More information can be had by clicking this link. Autoimmunity Research Foundation.

I hope this is of help to you.

Caroline

Sx.95, iritis 96. Pred. to 3-01. Pred., IV Medrol, MTX,neoral end 02, Dx. Neuro w/Cardiac sx, severe hip and hand pain, M-9-02, Benicar 12-02. MP-I Jan. 03. 1,25 D 58. Cardiac, & joint pain resolved w/MP-1. MP-II Feb. 04. Oct. 04, 25D=10, 125-D=34
 
 Re: Full Body Pet Scan...
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   02-09-05 00:31

Judy,

In addition to Caroline's excellent information, you might like to read this http://www.thejcdp.com/issue017/baur/07baur.shtml which explains a bit more about PET scans and how they work. It explains that this diagnostic tool is not specific for differentiating sarcoidosis or tuberculosis from cancerous tumors. In a PET scan, FDG may accumulate in non-neoplastic tissue such as new granulation tissue, areas of inflammation, and early post-op scarring.

Physicians like to have a tissue biopsy of usually non-necrotizing granulomatous inflammation to assist in diagnosing sarcoidosis, because the only way to diagnose the disease is by excluding other diseases that might possibly explain the symptoms. There is no one specific test that can be used to diagnose sarcoidosis. Blood tests are useful in diagnosing sarcoidosis, and the lab tests Caroline mentioned, the two vitamin D metabolites, are some of the latest tests used.

Doctors usually decide to "wait and watch" rather than treat sarcoidosis because the commonly-used treatments are so toxic, are fraught with side effects and they relieve symptoms, rather than providing reliable treatment. That is why the treatment we discuss here, the Marshall Protocol, is radically different. Please feel free to read the success stories that patients have posted.

Best wishes,
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: Full Body Pet Scan...
Author: judy osmon (---.friendlynet.com)
Date:   02-09-05 10:38

THanks so much for the feed back. I will take your advice and read the info here at this site and also ask my doctor about the d metabolites.
 
 Re: Full Body Pet Scan...
Author: Linda Bockhold (---.nyc.rr.com)
Date:   03-03-05 19:57

Pet scan impression: Abnormal whole body demonstrating multiple hypermetabolic foci in the neck, axillary regions, mediastinum and hilum consistent with malignancy and possibly metastatic disease to the left adrenal gland. Also, I had cellulitis of my left arm with underlying Sq. C.C. a month ago of which I took Biaxin for 10 days. Cellulitis cleared up and Sq. C.C. was cut out. Now, I'm having a mediastinoscopy next Frid. to sample the nodes on biopsy. I do not have any s & s of sarc., and a breast cancer survivor X's 2, since 1987 & 1991. My Dad died of lymphoma, mom had Ca and also grandparents. To me, it's looking like Ca, what do you think?
 
 Re: Full Body Pet Scan...
Author: Lottie (---.proxy.aol.com)
Date:   03-03-05 22:29

Linda,

Welcome to SarcInfo

It’s difficult to say. You say that you don’t have the symptoms of Sarcoidosis. Since it’s a systemic disease, there are many symptoms that people including doctors aren’t aware of.

Do you have any of the symptoms listed here? Hypervitaminosis D Symptoms

A test of your D metabolites can help tell if you have a Th1 illness which Sarcoidosis is among, as opposed to cancer. Information that you can print out for your doctor is here. It takes about a week to get the 1,25D results back.

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

My family has a big history of cancers as well, and so far, except for an instance of squamous cell carcinoma, I'm cancer free.

I hope that everything turns out well for you.

If it does turn out to be Sarcoidosis, the Marshall Protocol will help you recover from the disease.

Please feel free to ask any further questions, and check your email for more information.

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: Full Body Pet Scan...
Author: Victoria Williams (---.hsd1.ca.comcast.net)
Date:   08-07-05 12:12

Newly diagnosed sarcoid patient seeking understanding on recent pet results. Is the information below is consistent in some sarcoid patient? Was told that I have multiple hypermetalic nodes involving both inguinal regions, apopyseal joint in the lower lumbar,external iliac chain bilaterally as well bilateral hilar, subcarinal and pre-vascular nodes. Pulmonologist indicated saroid have to be considered as a possiblity vs some type of relatively low-grade lymphoma. He want to also repeat the pet in 6 months. Clinical symptoms, I have shortness of breath, fatigue, bilateral swelling of ankles. Recent breathing exam was mild, sed rate is 70, but ace was negative. I did refuse the prednisone.
 
 Re: Full Body Pet Scan...
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   08-07-05 17:34

Hello Victoria,

Welcome to SarcInfo.com. We are glad you found us. I have sent you some information by email.

I am sorry you are in that phase of diagnosis where everything is in limbo, but many sarcoidosis patients have been where you are, because we were also told that lymphoma was a possible explanation for our symptoms -- before finally being diagnosed with sarcoidosis.

If you want to better understand what the PET scan report means, you can look up the big medical words in a medical dictionary like the one (click-> here. Most of the terms in your post describe human anatomy. To use the dictionary, be sure you spell each word correctly. For instance, the "hypermetalic nodes" you mentioned might actually be "hypermetabolic nodes" and "apopyseal joint" is really "apophyseal joint."

Your pulmonologist gave you good advice when he said the findings are consistent with sarcoidosis, but sarcoidosis is diagnosed by excluding the other possible diagnoses. The sed rate (ESR) can be elevated in sarcoidosis, but not all sarc patients have an elevated sed rate. In addition, there is no "positive" or "negative" ACE test. You can read more about tests used in diagnosing sarcoidosis on sister website in the Sarcoidosis thread.

I hope you will continue reading on this board to get a better understanding of this disease. The best place to start is the tutorials at the top of the page. Please let us know if you need any more help.

All the best to you,

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
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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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