CellCept
July 12, 2008
Currently, I am migrating from Cytoxan-chemo-to CellCept. Yes, cellcept is usually used for transplant patients, but it is an immunosuppressant; therefore, helpful in multiple sclerosis. I am taking cellcept as maintenance therapy following my course of chemo.
Usually you start at 250mg (one pill) and after months, yes months this is not an exaggeration, you end at 2000mg. This means eight, EIGHT,8 pills a day. Of course, that is in addition to the multitude of other symptom meds you already take.
But it works. Yep, thats right it works. For how long, I don’t know but I’ll take it. And I’m happy to have something that works. Even though it means even more blood work. After all the Cytoxan infusions, mere blood work is a joy to undergo.
I am only on the first pill. I increased to two pills a day, but my white blood cells plummeted so I had to drop back to one pill a day. Looks like this could take awhile.
Having ms, atypical ms, primary progress ms is like waltzing or a good polish polka. You take a few steps forward, spin, a few backwards but never end up where you begin. If it is done right it is fun. Not that ms is fun, but life is really what you make it. There are no guarantees. You happiness is all about being in the moment, moment by moment. With that in mind, no matter where you are, or what you are going through, life can be good.
Atypical Multiple Sclerosis 
January 4, 2009 at 7:49 am
Hi Deb C,
I have been taking cellcept since july 2008. I have primary progressive ms and cellcept was the follow-up drug to a year course of monthly chemo (cytoxan) treatments. So far, I have been stable on cellcept, meaning I haven’t lost anything I gained from the chemo. So our situations are different. But, I have a sister that used copaxone, skipped chemo and is on cellcept. She has a form of relapsing remittimg ms and has improved on cellcept. According to my docs, most people tolerate cellcept well; although cellcept is typically thought of as improving things as much as keeping them steady. But as I said my sis has improved on cellcept.
I hope I have helped. Good luck with everything
Cindy
January 2, 2009 at 1:26 pm
how long have you been taking the drug and how long before you saw any results? were you in a middle of an attack and how long had it lasted/ what were your sytmptoms? just strted 8 days ago kinda hoping it works i have tried copaxon, getaseron and had to get off i spms and habe attack now for sic weeks after car accident anr pneumonia prior i was driving aand mobile they had statred me an novantrone had a slight rash but halted treatment i believe they can conmtrol that with somwthing like benadryl, as a fluke given iv solumedrol for 5 days saw a 40%MIMPROVEMENT , MAYBE BECAUSE COMBINATION TE
firtst time i ever responded to iv steriod otherwise not on day of dischargfe gotr into car accident, no seatbelt flopped back and forth has been down hill since any info appreciative/ God bless
deb c