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Old 02-10-2012, 09:33 AM #1
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Juanitad Juanitad is offline
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Join Date: May 2009
Location: Eastern TN
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Juanitad Juanitad is offline
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Join Date: May 2009
Location: Eastern TN
Posts: 314
10 yr Member
Default CYTOXAN anyone?

Hello everyone - went to Vanderbilt yesterday to see a neuro who specializes in mg at the MDA clinic there and had an interesting visit. Just a little background first - I've had mg for 12 years and been basically the same treatment plan as far as immunosuppression the entire time (Cellcept-3000 mg daily). Have had a thymectomy and do IVIG bi-weekly along with mestinon and Cellcept with predisone added in for those times when nothing else works (currently on 35 mg daily). My local neuro and I thought it might be time to get another opinion for a treatment plan, so off to Vanderbilt my daughter and I went.

Their suggestion was to try IV Cytoxan (cyclophosphamide) in place of the Cellcept. It is actually a chemo drug and in high doses carries a lot of side affects. However, their experience in using it for mg in smaller doses administered via IV monthly, is that it is effective without a lot of the bad side affects. It doesn't work for everyone, but in several cases similar to mine, has worked when Cellcept didn't. The goal is also to eliminate the presdisone and Cellcept completely.

Since I have been on Cellcept so long, I can't really tell if it is working or not. I guess the only way I could tell would be to stop it and see if my mg gets worse.

Has anyone out there tried Cytoxan? If so, what was your experience? I'm in the learning stages right now and will be talking to my local neuro and internist once I understand what the heck I'm talking about.

Thanks for have a great weekend.
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