Medical Forum / Diseases and Disorders / Arthritis / August 2006
Looking for a specialist in systemic sarcoidosis
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paul chinaski - 03 Aug 2006 01:57 GMT My grown son has systemic sarcoidosis, with gastric and joint involvement, and now perhaps also neural involvement. He did have some past lung involvement but none currently. The sarcoidosis specialists seem to focus on pulmonary sarcoidosis and are at a loss when it comes to the broader picture. Does anyone know of a specialist in systemic sarcoidosis anywhere in the Mid-Atlantic states? (We are in New Jersey.) Should we try the Mayo Clinic? Even their web site seems to treat sarcoidosis as only a lung disease. Thanks for any advice.
vickie b. - 03 Aug 2006 04:25 GMT > My grown son has systemic sarcoidosis, with gastric and joint > involvement, and now perhaps also neural involvement. He did have some [quoted text clipped - 4 lines] > Jersey.) Should we try the Mayo Clinic? Even their web site seems to > treat sarcoidosis as only a lung disease. Thanks for any advice. Paul just wanted to let you know that prayers and thoughts are heading your way. My husband had this several years back but we're in the midwest.
Vickie B.
ironjustice@aol.com - 03 Aug 2006 19:30 GMT > My grown son has systemic sarcoidosis, with gastric and joint > involvement, and now perhaps also neural involvement. He did have some [quoted text clipped - 4 lines] > Jersey.) Should we try the Mayo Clinic? Even their web site seems to > treat sarcoidosis as only a lung disease. Thanks for any advice. They've linked sarcoidosis to iron .. problems .. in the body.
<<snip>> disruption of normal iron metabolism <<snip>>
http://tinyurl.com/ejufv
Pulmonary diseases, such as infectious pneumonia, chronic obstructive pulmonary disease, cystic fibrosis, sarcoidosis, interstitial lung disease, acute respiratory distress syndrome, bronchogenic carcinoma, and sepsis, involve a similar disruption of normal iron metabolism and oxidative stress in the lower respiratory tract.
---------------------------------------------------------------------------------------------------------- Hemochromatosis is an iron loading disease.
<<snip>> Infiltrative diseases of the thyroid include systemic sclerosis, hemochromatosis, sarcoidosis, chondrocalcinosis and amyloidosis <<snip>>
Amyloid goiter in a case of systemic amyloidosis secondary to ankylosing spondylitis. Cohan P, Hirschowitz S, Rao JY, Tanavoli S, Van Herle AJ J Endocrinol Invest. 2000 Dec ; 23(11): 762-4
Infiltrative diseases of the thyroid include systemic sclerosis, hemochromatosis, sarcoidosis, chondrocalcinosis and amyloidosis. Only rarely does thyroid amyloidosis result in clinically palpable goiter. Classically, amyloidosis is associated with tuberculosis, rheumatoid arthritis, multiple myeloma or inflammatory bowel disease. Only rarely does clinical amyloidosis develop in the setting of ankylosing spondylitis. We describe a case of amyloid goiter in a patient with ankylosing spondylitis-associated amyloidosis.
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If you look in this study they mention .. iron .
<<snip>. iron mediated oxidative stress <<snip>> . Ghio AJ, Roggli VL, Kennedy TP, Piantadosi CA Sarcoidosis Vasc Diffuse Lung Dis. 2000 Jun ; 17(2): 140-50
BACKGROUND: In many patients with sarcoidosis, the granulomas contain inclusion bodies within giant cells. Many giant cells contain crystalline oxalate that chemically coordinates iron on the surface of the crystal. If this iron is incompletely coordinated and capable of redox cycling, then oxalate might contribute to granuloma formation in the lung. METHODS: Using human tissues, isolated alveolar macrophages and respiratory epithelial cells, we measured the ability of calcium oxalate to sequester iron, stimulate cytokine release and cause granuloma formation. We then studied the effects of in vivo oxalate instillation on pulmonary granuloma formation over 3 to 6 months in rats. RESULTS: Calcium oxalate present in human sarcoid granulomas sequesters significant amounts of iron and ferritin. In alveolar macrophage cultures, oxalate accumulates iron and stimulates ferritin production and giant cell formation. In cultured respiratory epithelial cells, calcium oxalate increases the release of two interleukins (IL), IL-8 and IL-6, involved in granuloma formation by 8 to 10 fold within 24 hours. Intratracheal instillation of calcium oxalate crystals into the lungs of rats is associated with pulmonary iron and ferritin accumulation and organic carbonyl formation consistent with sustained oxidative stress. These exposures were accompanied by influx of alveolar macrophages, giant cell formation, and a granulomatous response in the lung. CONCLUSIONS: These results support an association between calcium oxalate deposition in the lung, iron mediated oxidative stress and formation of some of the granulomas of sarcoidosis. ----------------------------------------------------------------------------------------------------------------
It may be worthwhile investigating the effects of NID / near iron deficiency ..
http://rheumatology.oxfordjournals.org/cgi/content/abstract/42/12/1550
Who loves ya. Tom
Jesus Was A Vegetarian! http://jesuswasavegetarian.7h.com
Man Is A Herbivore! http://tinyurl.com/a3cc3
DEAD PEOPLE WALKING http://tinyurl.com/zk9fk
Diane - 03 Aug 2006 23:59 GMT paul, i just want you to know that i've seen your post. i'm sorry i have no answers for you but perhaps someone will come along who does. since you are new to the group, i also wanted to alert you to the fact that the person signing in as "ironjustice" has an agenda and seems to believe that all diseases are linked to iron overload. we consider him a spammer. i just don't want you to be misled.
best of luck to your son,
diane
ironjustice@aol.com - 04 Aug 2006 00:30 GMT > paul, i just want you to know that i've seen your post. i'm sorry i > have no answers for you but perhaps someone will come along who does. [quoted text clipped - 6 lines] > > diane Actually a quick search of YOU .. and 'remicade' .. brings up .. ?
http://tinyurl.com/j343x
Jeez .. that is a LOT .. of posts ..
You .. like .. remicade .. do .. ya .. ?
Sort of like your .. pal .. NinaW ..
Eh ..
I wonder if THIS .. post refers to .. you .. ?
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Who loves ya. Tom
Jesus Was A Vegetarian! http://jesuswasavegetarian.7h.com
Man Is A Herbivore! http://tinyurl.com/a3cc3
DEAD PEOPLE WALKING http://tinyurl.com/zk9fk
Fire Chief - 04 Aug 2006 01:44 GMT > Who loves ya. > Tom That's because your mother hates you.
... Intel on the inside. Idiot Tom on the outside.
paul chinaski - 04 Aug 2006 04:17 GMT > paul, i just want you to know that i've seen your post. i'm sorry i > have no answers for you but perhaps someone will come along who does. [quoted text clipped - 6 lines] > > diane Thanks Diane. Although I'm new here I am not new to other groups, and can generally figure out who's who pretty quickly. I'm still hopeful someone can come up with a specialist name.
Fire Chief - 04 Aug 2006 07:28 GMT > Does anyone know of a specialist in systemic sarcoidosis anywhere > in the Mid-Atlantic states? (We are in New Jersey.) Paul, I can't locate that in the Arthritis Foundation's list of diseases. However my wife's TABER calls it a multisystem disease of unknown etiology.....occurs most often in the southeastern U.S., is 10 times more common in blacks than whites, and is more common in women than in men.
Diagnosis is made through a combination of clinical, radiographical, and histological findings. Sarcoidosis must be differentiated from other diseases that cause granulomas, such as tuberculosis, histoplasmosis, and some other fungal infections.
Specialists in arthritis may be located at the following URL:
American College of Rheumatology
http://www.rheumatology.org
Left hand side: Find A Member By State By Town
I must have seen 50, 60 or more towns listed in N.J. I didn't go into any, but I'd wager there are several hundred in the State.
... Bullsheet: An advertising supplement in a newspaper.
Nann Bell - 04 Aug 2006 21:50 GMT > American College of Rheumatology > [quoted text clipped - 7 lines] > I must have seen 50, 60 or more towns listed in N.J. I didn't go > into any, but I'd wager there are several hundred in the State. good point, chief! Paul, some of the RDs listed on the ACR wevsite also list their particular interests. You might be able to locate one with a sarcoidosis interest that way. If none of the specify that disease, at least you can start calling all the offices and asking the staff.
 Signature Nann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare
blades49456 - 04 Aug 2006 22:05 GMT Hi, Paul.. There's a lot of systemic autoimmune diseases with overlapping symptoms. With past lung involvement, it might be well to consider the possibility of a systemic autoimmune vasculitis.
I believe the treatments for systemic autoimmune vasculitides is pretty much the same a for sarcoidosis (not really of that.. haven't checked it out).
If you care to purse that possibility, the Johns Hopkins Vasculitis Clinic is first rate. They don't list sarcoidosis as a vasculitis, yet I think it likely they would take a referral from your son's current physician.
Take a look at Churg-Strauss syndrome, Wegener's granulomatosis, Microscopic polyangiitis etc. The URL is http://vasculitis.med.jhu.edu/
Cleveland Clinic also has a Center for Vasculitis at http://www.clevelandclinic.org/arthritis/vasculitis/default.htm
Best wishes, Bruce
> My grown son has systemic sarcoidosis, with gastric and joint > involvement, and now perhaps also neural involvement. He did have some [quoted text clipped - 4 lines] > Jersey.) Should we try the Mayo Clinic? Even their web site seems to > treat sarcoidosis as only a lung disease. Thanks for any advice. Paul T. Holland - 05 Aug 2006 02:37 GMT you probably already know that a great number of docs who treat this are pulmonary spec.... but have you checked any of these out:
Johns Hopkins University Sarcoidosis Clinic 5501 Hopkins Bayview Circle, 4B72 Baltimore, MD. 21224 (410) 550-7753
Henry Yeager, M.D. Dept. of Medicine, Georgetown Univ. Med. School G-104 Kober-Cogan 3800 Reservoir Road, M. W. Washington, D. C. 20007 (202) 687-8830
www.sarcoidosisnetwork.org http://www.stopsarcoidosis.org/ http://www.sarcoidosisonlinesites.com/ http://www.sarcoidosissharma.com/pages/8 http://www.sarcoidosisresearch.org/ http://www.sarcoidconnection.com/
Sarcoidosis Awareness Network 1031 Farran Ave. Chetlenham, MD 20623 301.372.2885 Linda Lanier
i have read articles by:
RAJANI KATTA, M.D., Baylor College of Medicine, Houston, Texas assistant professor of dermatology at Baylor College of Medicine in Houston, Tex. She received her medical degree from Baylor College of Medicine and completed a residency in dermatology at Northwestern University Medical School in Chicago.
Address correspondence to Rajani Katta, M.D., Assistant Professor of Dermatology, Baylor College of Medicine, 6560 Fannin, Suite 802, Houston, TX 77030.
N K Nikhar, MD, Assistant Professor, Department of Neurology, George Washington University School of Medicine N K Nikhar, MD, is a member of the following medical societies: American Academy of Neurology
Lenner R, Schilero GJ, Padilla ML, Teirstein AS. Department of Pulmonary and Critical Care Medicine, Mount Sinai-NYU Medical Center, New York, NY, USA.
University of Pittsburgh Medical Center had a sarc. dept at one time, as did Duke University...
hth
paul
> My grown son has systemic sarcoidosis, with gastric and joint > involvement, and now perhaps also neural involvement. He did have some [quoted text clipped - 4 lines] > Jersey.) Should we try the Mayo Clinic? Even their web site seems to > treat sarcoidosis as only a lung disease. Thanks for any advice. paul chinaski - 08 Aug 2006 01:52 GMT > you probably already know that a great number of docs who treat this > are [quoted text clipped - 55 lines] > > paul Thanks so much Mr. Holland for your time and effort. We'll start checking out some of the names and facilities you suggest. /Paul
Harvey R. Stone - 08 Aug 2006 03:17 GMT > Thanks so much Mr. Holland for your time and effort. We'll start checking > out some of the names and facilities you suggest. /Paul and that makes it all worth while. Harv
Paul T. Holland - 09 Aug 2006 01:34 GMT de nada
you might also want to follow up on this one:
http://www.nsrc-global.net/bulletin.htm
i don't know the details, but it's an investigational study [don't know if it has concluded] and the principal researcher is/was in new jersey...page included an email address and a phone number
here are listings for support groups in nj: http://www.sarcoidosisonlinesites.com/northeast%20support.htm#nj
also - take a look at: http://www.aafp.org/afp/981200ap/belfer.html
read down to the bottom - the author of this paper includes all forms/expressions of symptoms...
also this one: http://www.turkishrespiratoryjournal.com/summary.php3?id=375
> > you probably already know that a great number of docs who treat this > > are [quoted text clipped - 58 lines] > Thanks so much Mr. Holland for your time and effort. We'll start > checking out some of the names and facilities you suggest. /Paul
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