Cellcept - any thoughts?
 

Hello everyone! I'm still @ the hospital but am going home tomorrow (and can't wait:)! I had plasmaphoresis for 5 days then IV IG for 4, so I'm tired but feel pretty good. Anyway, the reason for this is to get everyone's thoughts on Cellcept. MY doctor seems to think I should really be on it, and I want to do ANYTHING that may put me into remission......any thoughts? If anyone can give me some idea of what to expect it would be greatly appreciated!:)

Hi erinhermes,
I' m presently taking 300 mg Mestinon, 40 mg Pred and 2 g Cellcept (all daily doses). Peak doses were 480 mg Mestinon, 75 mg Pred, Cellcept was never changed.
The only remaining MG symptom is a rather severe weakness in the legs.
All other symptoms progressively disappeared since I was dx'ed in july 2007 and began treatment in August 2007, with a significant improvement step in January 2008.
I had also one plasmapheresis and 2 IvIg, but both treatments were unsuccessful.
My neuro wants to reduce pred as low as possible (I' ll go to 35 mg/d to-morrow), rely on Cellcept and adjust Mestinon as needed.
I do not have any Cellcept side-effects to report.
I think it would be a good idea to try Cellcept but be patient, it could take several months for Cellcept to be efficient…
Maurice.

Thank you!
 

THanks so much for responding! I was starting to get nervous.......wondering why no one was either taking cellcept or had bad side effects.......Right now I'm @ 420 Mestinon, 40 Prednisone and 1000 mg of cellcept, so here's hoping remission is just around the corner:)! Take care!

I've taken Cellcept for years, not that it does much (if anything) for me. I am a very difficult, unusual person with MG (MuSK MG).

Recently, the FDA has issued a black box warning on Cellcept. Seems some folks are coming down with PML (activation of JC virus that lies dormant in most of us) which leads to demylelination and usually death. I've heard of at least one MG clinic that no longer gives out new prescriptions of Cellcept to patients because of that and watches the patients already established on it very carefully.

I suggest you do a lot of research online (easy to do a search on "Cellcept PML"), discuss with your doctor, and think hard about it. As for side effects I've personally experienced---diarrhea is the main one.:eek: I take an immodium every single day to keep that under control. I am definitely considering getting off of the Cellcept, but wonder what's next????

Good luck with your decision.

Missy

Hi erinhermes,

glad you started this thread, sorry its taken me a while to respond, my fingers havn't been up to typing much.

I've been on cellcept for nearly a year now, as the azathioprine didn't seem to be working, but now I've done a search on PML I think I'm with Missygirl and would like to get off it, but yes what next!?!?!?!?!?

I was feeling soooooo very good lately, but a recent bout of something ( the doctors could't find what was wrong with me in hospital) and a dose of antibiotics all my medication seemed to be going straight thru. Its back to doing the dishes in 2 stages, and being frustrated at my fingers not working!!!!!!!!!!!!!!!!!!!!

Apart from that I don't think the cellcept affected me in anyway.

Hope you get to go home soon!!
take care
redtail

Hey redtail! I was so glad to hear from you! I"m sorry to hear you haven't been been feeling well. It's so depressing; I was doing so well, too then started to feel yucky and before I know it I'm back @ the hospital for a week with a cathetar in my jugular - I was soooooooo scared! I have never been that scared in my life - ever - lifelong fear of needles (!), then I had IV IG for 4 days...........usually the IV IG makes me feel better IMMEDIATELY, but not this time. I"m home now, on the sofa for the past 3 days, unable to do anything - I actually felt better BEFORE I went into the hospital, plus they want to put a permanent cath in me - my hemo thinks I'm going to be "chronic" - not fun! I just want to cry! I know I'm being a big baby, but I just want to be whole again! I look back on when I had energy before and just want to scream! I was so lucky and didn't realize it! My neuro put me on antidepressants but they don't seem to be working.........Just feel sad today....:(