I just visited the neuro yesterday and I’m stopping Cellcept. I started at 2000 MG/day for several months, then when that wasn’t doing anything, we went up to 3000 MG/day for two more months. This was while weaning off IVIG.
IVIG did work well for me at full dose (1gm per kilo every three weeks) but can’t stay on that forever if there are other options. Unfortunately I guess Cellcept isn’t that other option as I’m back where I started. Not that bad off but lost my good progress.
Next step is to go back on full IVIG until I improve then try transitioning to something else for use long term or until I’m fixed.
Hard to separate out what the side effects of Cellcept are. Seemed to be a little more tired but nothing definitive. No nausea at all. No illnesses or colds (or tumors) at all while on the drug. When I bumped it up to 3000 mg daily, I definitely had some digestive system issues. Bowel pattern was significantly different. No big deal but quite different. More gas and urgency.
I also had one blood test where my RED blood cell count dropped (anemic). A follow-on blood test was normal. No drop in white count at all.
My toes have been extremely cold this fall while on the higher dose but that might just be the CIDP kicking back in.
In summary, Cellcept was kind of a non-event for me as far as side effects go… just didn’t work for my CIDP.
I really hope it works for you. I think it is one of the best solutions out there if it works. We’re all different.
Best of Luck