AnonymousJune 8, 2006 at 11:06 pm
My son is 17 and has had cidp for 7 years now. He is currently taking prednisone, cell-cept and IVIG. His doctor is raising his cell cept dosage from 750mg twice a day to 1000 mg twice a day. He is about 160lbs. If anyone else is taking cell-cept I would like to know what dosage you are on. Is there any way to search the old discussion board messages? I know that over the years alot of messages have been posted about cell cept and I would like to read them. Is that possible?
AnonymousJune 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…
AnonymousJune 12, 2006 at 5:45 pm
Shelbyrose, I have been taking CellCept 1000mg 2 times a day since I was dx. with CIDP in Nov. 2005. I also receive IVIG 60mg every 30 days. My last visit to the neurologist showed I have greatly improved since Jan. of this year. I am back to working part-time in the operating room as a reg. nurse and do Iam able to do mostly what I did before being dx. with CIDP except run. I ran for the last 20 years or so, 20 to 25 miles per week. I weigh 125lbs. So I do not think this dosage is to much for your son. Good luck to him and you.
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