Reply To: Have you relapsed and recovered?
I was symptom free for years! I was on a maintenance dose of IVIG every 5 weeks of 35 grams. My neurologist thought maybe I was in remission so we decided to try and push the infusions out to 6 weeks and see what happened. I knew before I made the 6 weeks that I was not in remission! My symptoms of CIDP came flying back. I was miserable and very scared too. We had to drop me back down to every 2 week infusions. I stayed at the 35 grams but had to stay at 2 weeks for a few months.. then went to every 3 weeks… and then every 4 weeks. I had to stay at every 4 weeks for a long time. On my next infusion I am going to try and push back out to every 5 weeks. With any luck I will get there and be able to stay there symptom free. I don’t think i had any new nerve damage caused by the return of symptoms because we jumped right on increasing the infusions. But I now know that I probably will not go into remission with IVIG treatment because I have been on IVIG for 11 years now. So if i want to try and knock this into remission i have to try a different treatment route such as high-dose steroid infusion push or one of the immune suppression drugs. At this point, since I get good results with IVIG i don’t want to switch. Why fix something if it isn’t broke! Good luck to you.