Myasthenia Gravis Support Group

i have been on cellcept for over a month. The first two weeks my dosage was 500mg BID, then it was increased to 1000mg BID. I didn't notice any side effects initially - except I did have a MG crisis, had to be hospitalized and was put on plasmaphoresis for five times every other day. All during this time I was on the 1000mg BID dosage of cellcept. When I was discharged to home I continued the same dosage. The one day after my morning dose I experienced a burning sensation. It literally felt like everything internal was on fire. I was not running a temp but was extremely agitated, shaky and uncomfortable. I called my doc (unfortunately it was a Friday). This sensation lasted about seven hours. I did what I know I should not have done and held the cellcept over the weekend (all the nurses out there I know I should not have ) but I didn't want that sensation again. When I spoke with my doc on Monday he reduced the dosage to 500mg at night. I have not had that sensation again. Has anyone had this happen to them? I don't know if it was the cellcept, a side effect of the plasmapheresis, or my highly anemic state - I had to get a blood transfusion later that week. Any help or suggestions would be greatly appreciated.

Cherokee23

How are you feeling now, Cherokee23?

Hi Cherokee23

I also take Cellcept 2000mg a day. I also take Prilosec over the counter to help with the burning I take my meds on empty stomach so I do 4am 4pm I also take predisone and Mestinon, I am a diabetic. I was anemic for months I had all kind of test to find out the problem I did'nt want to stop the Cellcept they put me on iron tabs 325mg 3 tabs a day I am now a new person.I thought that Plasm.made me so weak now my blood test are normal it took about 3 mon. for me to feel better.

Hope you get better soon

I am hanging in there. Thanks for asking.

Cherokee23

For those of you on Cellcept, how effective has it been? My wife has had 2 crisis in the past nine months when she was being treated with Immuran and Mestinon. Now the doctors have her on Cellcept to try to keep from going to a regular plasmapheresis or IVIG regime. Just wondering how it has worked for others. She's scared to death of another crisis and having to be intubated again.

I've been on Cellcept, Mestinon, and Prednisone since September. I haven't noticed and response to Cellcept. I have been told that Cellcept often takes months to work.

For me, I think CellCept is helpful.