Reply To: need spome advice on this cidp rollercoaster ride??

March 5, 2012 at 2:51 am

Hello Lori,

I can only comment on my case, but it was clear that PE alone was not going to do the job and that I needed something else. PE worked very well for me, returning me to nearly full function; it just did not last for any reasonable length of time. I wanted to stay away from steroids if I could, so CellCept, with the shortest induction time, looked like a reasonable choice. Unfortunately, it did not work out, so I went with the regime I posted above. If I have been using IVIg and working at nearly full function, no, I would not have added an immunosuppressant. If the IVIg was only keeping me from getting worse, I first would try a very aggressive IVIg protocol, perhaps getting loading doses every other week for a few months (my insurance would have allowed it). If that did not work well, I would then add an immunosuppressant.

However, like GH said, you need to discuss these options with your neurologist. My opinion, as a well-informed patient, is that your IVIg protocol could be more aggressive. Yes, it would be more aggressive than typical, but there is reason to that it might be beneficial. There may be extenuating circumstances that argue against an aggressive protocol, but again, you need to discuss those with your neurologist.