Reply To: Anyone tried CellCept?

May 27, 2012 at 12:05 am

My daughter has been on cell cept for about 2 1/2 years, one needs to allow 8 months or so for it to ‘take hold’. For about 1 1/2 years of the 2 1/2 years it was combined with plasma pheresis. A few months ago a new doc (new to us) listened to me about the fact that the perma cath had been in for over 3 years and gee don’t you think it could be taken out and we’ll see how she does on MM (cell cept) alone? The perma cath had grown into her tissue and had to be taken out under anesthesia. So far so good on the cell cept alone, but it’s only been a couple months. She still cannot walk after 4 1/2 years CIDP and we’ve given up hope for that and try to work around it. The hands are pretty good though, except really fine motor skills. To answer the question, yes, the cell cept is working, 1,000mg. 2 x day on an empty stomach. It’s expensive, hopefully you have good insurance.