I’ve taken Cellcept for four years

June 9, 2006 at 10:16 pm

Hi. My name is Julie. I’m 39 years old. I’ve had CIDP for four years. I’ve also taken Cellcept for about that long. I originally started with Imuran. It made my hair fall out in chunks! I like Cellcept; it’s done a lot for me. However, it hurts my stomach and makes me eat a lot because it leaves your stomach feeling kind of cold, icey, or hungry.

I use to take four pills a day (2000 mgs a day). I did fine on that. I didn’t catch colds or virus’ easily etc. It was tough on my stomach though and my doctor had to put me on ulcer meds. I’ve been able to cut back two a 1,000 mgs a day. This is progress for me because I just gave up my plamsa pheresis treatments as well. I’ve been receiving one every two weeks for a total of four years (106 total). I would not be frightened of the dose. I would think seriously about plasma pheresis if you don’t see a huge improvement with I.V.I.G. It works much better for me.

Above all, your son should rest, exercise to become stronger, and challenge his mind. Depression sets in pretty quickly when you experience such a horrible disease, but he will make it through and be a very strong person as a result. I’m sure sorry you guys are going through this. Please stay in touch with other folks on this website. It’s a very good resource.

Take care & best wishes…