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Veteran Member

Date Joined Jul 2007
Total Posts : 2148
   Posted 8/26/2008 8:36 PM (GMT -6)   
I was not sure about forum rules and did not want to hijack PeanutMom's post.
Re: Remicade and MCD.  My GI not really sure but is checking w/Kidney Doc's at Mass General Hospital, both UC and MCD are autoimmune diseases diseases so who knows, with remi being so expensive and MCD being kind of rare, it is a unique opportunity.
however, my next step drugs for MCD are Cellcept and Cyclosporine, both of which I cant take with remi so if remi did not help my MCD I would have to get off it (and not be able to go back on it) to  be able to try cellcept and cyclosporine and leave me only Humira and Cimzma which are not FDA approved and I heard that MGH no longer has the Humira I couldd only get them if my insurance approved them off label.  I want as many options as possible. If both cellcept and cyclosporine do not work then I will try remi.
I am so happy your husband is in remission, what drugs did he take to get him there?  Is he a frequent relapser?
Beth, 32 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 7.5mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!

Regular Member

Date Joined Aug 2008
Total Posts : 20
   Posted 8/26/2008 10:14 PM (GMT -6)   
Hi Beth75,

If this is too "off topic" for this forum, feel free to e-mail me. I will check my profile after I write this and make sure I allow e-mail...

Anyway - my husband went for years without a relapse. Most of his 20's, in fact. Then we moved from the UK to the US and he had a relapse. Steroids worked for a while, but then the side effects became bothersome. We moved to NC in 2000 and he started seeing a nephrologist at Duke University and was started on Cyclosporine (Neoral). His cholesterol at that time was off the charts! He now takes a maintenance dose of 100 mg of Neoral a day, plus Zetia, Lipitor and Cozaar. He has no adverse side effects from the cyclosporine (that we know of!) and his cholesterol is down to 175! It has been almost 8 years since a relapse. Touch wood.

Wishing you good health!
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