CellCept? Does anyone have experience with it?

I’ve been on IVIG and Prednisone for about a year
with varying degrees of help. The Prednisone
caused severe glaucoma resulting in emergency
eye surgery. The IVIG has damaged my kidneys
and my kidneys are failing. I have not tried
plasmapheresis. The debilitating weakness comes
and goes, but is definitely better than when I was
first diagnosed. Now my neuro wants to start me
on CellCept. I’ve researched it a lot and some of
the side effects make me hesitant; not just the
immediate ones, but the ones down the road:
leukemia, lymphoma, etc., are very scary!!! Any
experience and thoughts???

I can't comment on the long term side effects of CellCept as I was put on it for only a short time. I had no short term side effects but discontinued it after 6 months as it was ineffective in improving my CIDP symptoms. (We also tried Immuran, which was also ineffective.)

Hi there,

I've been taking Azathioprene (the generic for Immuran) for about 18 months and it has kept me stable. But I've been sliding back for the last 6 months and at my appointment in May, my Neuro is wanting to discuss trying CellCept. I didn't try Prednisone due to a previous bad reaction to it, so I went straight to IVIG, but I didn't respond well to it either and had to move on to Plasmaphereis. The Plasmapheresis treatments weren't pleasant but they did help, and with the Immuran the progression of the CIDP has slowed down.

As for the side effects of the meds, my neuro has me go to the lab for a blood test monthly to keep any side effects in check.

So, hang in there and continue to work with your Neurologist.

I tried Cellcept for 18 months in hopes of needing less frequent IVIg and getting off prednisone. The Cellcept did reduce my weakness and balance problems somewhat so I could almost get off prednisone, but I discontinued it when I began to have multiple squamous cell skin cancers on my legs. Perhaps no cause and effect, but I didn't want to take the chance.

I am on Cellcept but only for 1 month now I am taking 3000 mg a day. I get blood work done every month to check every thing. So far I am getting worse but its slow and from what I read it takes a while for Cellcept to start working.

I have read that Cellcept works great for some and does nothing for others. I know its not much but I hope it helps at the very lest its worth a try.

I've been on both IVIG, one treatment a month and Cellcept 3000mg per day for about 6 years now. Without the IVIG delayed even by a week, I become weak, loss of balance increases and pain increases slowly. The Cellcept is more for nerve pain and not taking that creates a great increase in nerve pain. Both are carefully monitored by lab tests. As for the side affects of either who knows, There are side affects even to constant use of asprin. Close contact with your doctor to insure lab monitoring and notifying him of changes you experience in yourself are the way to go.