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Old 06-26-2002, 11:19 AM   #6
Jay Tor
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Located this and over 1,100 other references using scirus.com a search engine specifically designed for sci/med articles. Another much larger search engine designed for locating obscure sci/med info is copernik2001 however it must be downloaded [it's free] and takes up lots of hard drive capacity.
[url="http://www.hamline.edu/~wnk/lupus-l/msg07622.html"]http://www.hamline.edu/~wnk/lupus-l/msg07622.html[/url]

Scanning of article titles suggests that this condition is still considered idiopathic [cause unknown]. Looks as though most investigations are being conducted in Europe, followed by U.S. and Japan. Articles mostly appear in HEM, ONC, RHEUM and related immunology-related journals.

Treatment modalities so far favour steroids as this appears to be a form of auto-immune disease. No surprise there since steroids [esp. prednisone] are still the med community's favourite med for anything to do with the immune system.

Suggest looking up meds used for transplant since almost all are immune-suppressants and there are quite a few currently in use such as MMF [CellCept], Cyclosporine [Neoral], Pentastatin, FK506 [Tacrolimus], photophoresis [a form of light therapy in conjunction with meds], etc.

The most successful results appear to have been obtained when these drugs are taken in combination - 2 or 3 different immune-suppressants at a time, usually with all meds taken at their respective therapeutic levels, over an extended period followed by a lengthy step-down [med dosage reduction].

Here are a few links:

CellCept [url="http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/203436.html"]http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/203436.html[/url]

Neoral - The most stable cyclosporine formulation is the Neoral which is why it's used most often in pediatric bone marrow transplant. Caution - everyone I know who's ever taken this at therapeutic dosage levels has major nausea and vomiting. The only way around it is to juggle your eating vs. med schedule.
[url="http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202176.html"]http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202176.html[/url]

Tacrolimus (Systemic)
[url="http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202914.html"]http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202914.html[/url]

Pentostatin - the 'label' use is for treating hairy cell leukemia, however this med's usage has recently [past 12 months] been extended for the treatment/ management of some transplant-related [auto-immune] conditions.
[url="http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202650.html"]http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202650.html[/url]

Methoxscalen [used in Photopheresis] - primary/original usage was for severe auto-immune skin disorders [esp. psoriasis].
[url="http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202650.html"]http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202650.html[/url]

Also suggest you look at investigational meds for the treatment of bronchiolitis obliterans which is a post-transplant auto-immune condition with invasive tissue growth in the lungs.
[url="http://clinicaltrials.gov/ct/gui/action/SearchAction?JServSessionIdzone_ct=6bx9d qplw1&term=bronchiolitis+obliterans&subm it=Search"]http://clinicaltrials.gov/ct/gui/action/SearchAction?JServSessionIdzone_ct=6bx9d qplw1&term=bronchiolitis+obliterans&subm it=Search[/url]

The major U.S. centers currently studying various auto-immune disorders include most of the major cancer centres, esp. Johns Hopkins. Recently found out that Yale also appears to be doing a lot of work in skin/connective tissue auto-immune disorders.

Also suggest you monitor the pharmaceutical manufacturers' Web sites for Phase II clinical trials and results for these and related classes of drugs.

Good luck,
Jay
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Old 06-26-2002, 02:11 PM   #7
tina43
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Thanks Jay for taking so much time to answer. I am currantly taking 10mg Prednisone (I started off with 30 mg) and 100mg Immuran. These meds have allowed me to have the stents taken out of my ureters but my back pain hasn't gotten any better. I am on a maintainance dose of oxycontin every day but wish I could stop. My doc says this is as good as I'll get but I'm not ready to except that. I am looking for a doc that has more than one patient with this disorder and knows a little more about it. My doc is half way in the dark. Can you help with that? Do you know anything about the Mayo Clinic or the Cleveland Clinic? Do you think they could help?
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Old 06-26-2002, 04:00 PM   #8
Jay Tor
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The Mayo has an excellent reputation worldwide for research. Didn't see anything directly related to retroperitoneal fibrosis on their research page even though the Mayo appears to be doing a lot research on connective tissue auto-immune disorders. Worth contacting.

If you're concerned about the Mayo's - or any other hospital's - specific expertise in retroperitoneal fibrosis, suggest you obtain a list of their staff [clinicians and researchers] and run a search for published journal articles. The other alternative is to continue trying to locate the U.K. physician working on the case studies project, he/she may be able to provide you with a U.S. colleague's name. Researchers often collaborate internationally esp. for rare disorders.

I'm most familiar with HEM/ONC and transplant-related conditions, so can't really offer very specific answers to your questions.
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Old 06-27-2002, 12:48 PM   #9
tina43
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Thanks Jay for the suggestions. If you run across anyone who knows anything about This, please send them my way! tina
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