Cellcept info.

September 18, 2008 at 11:47 pm

[QUOTE=espersen4]I’m not on the cellcept now. I went off of it at the beginning of June becaue my husband and I are trying for baby #2. I have been on it twice the first time for a year, symptom free, side effect free and I didn’t have to have IVIG. 500 mg 2/day The 2nd time I was on it for almost 2 1/2 years. Still no side effects but I did relapse about every 7-8 weeks and had to have IVIG also. In between relapses I was symptom free. I was on 750 mg 2/day

The first time, I had monthly blood tests. The 2nd time I ws not as good as I should have been but did have intermitent blood tests. I never had any significant illness either time I was on cellcept. I did get the flu or a cold here and there but I always recovered quickly.

The first time, I weaned off prednisone onto cellcept and had an IVIG during that process so it is hard to say exaclty how long it took to take affect. The 2nd time, I was a few months post pardum and my symptoms had come back with a vengeance. I had started the cellcept and still had to get IVIG at increasing frequency for about 2 months. Then I did a round of IVIG every day for 5 days, then once a week for a month, then every other week, etc. Until I was able to go 7-8 weeks in between. So it is a little hard to say how long it took for the cellcept to work the 2nd time too. Sorry for the “non-answer” answer but that is the best I can do.

For me, Cellcept has been a lifesaver. I was able to go a whole year basically feeling “normal” again. And then the 2nd time, it enabled me to take care of my baby. Without it, I was relapsiing every 1 1/2 weeks and was getting so weak that I could not hold her, pick her up out of her crib, or even dress her. That broke my heart.

I hope this helps. Please ask me anything you want. It helps me so much to feel like I can offer something on this forum. I have not experienced that before.[/QUOTE]
Thanks so much for posting your experience Christie. It seems like you have had a real time of it with your CIDP. I am trying to learn as much as I can about all of the treatments for CIDP i.e. which drugs work best in what situations. I’m glad to read of your positive experience with Cellcept. Good luck getting pregnant!