I have had CIDP for a year now and to say this year has had its ups and downs is a understatement. I know a lot of people her get IVIG and lots of other drugs to help with their CIDP but what I don’t know is do those treatments take care of all the problems that come with CIDP or is it more of a rollercoaster ride and they just help even it out. I am really trying to find out what to expected if that’s even possible.
Over the past year I have been on prednisone, cell cept, and IVIG. And it really seems that all of this seem to help for a bit and then I just relapse either for no reason I can tell or because I get really stressed out. After I relapse nothing seems to really help that much but to ride it out. Each time I relapse it seems to be a little worse and I am starting to think maybe none of the drugs are really doing anything and we are just switching trying them right before I go in to remission for whatever reason.
How big of a trigger is stress?
Does your CIDP have good days and bad even with treatment?
Yes, and I'm always wondering whether the drugs are working or not, but after an IVIG treatment I almost always feel better, but that takes a couple of days. As far as the prednisone goes I'm not sure what that's suppose to do. Gary
I found it’s hard to tell if there are any improvements. I had 4 rounds of IVIG and some days were a bit better than others but nothing really noticeable. Neuro said there were some improvements after 2 rounds but after the 4th said I was a bit worse. I started on prednisone 3 weeks ago. Oby the second week in, I felt stronger and didn’t get tired so quickly. I added the IVIG back this week and now I can’t tell if I’ve improved at all. I think another EMG may be the only thing that might show improvement.
Stress definitely makes things worse for me. And it diffinitely takes a while to recover. I’m finding it’s important to learn my boundaries in order to manage this condition and it’s effects.
There seem to be so many factors contributing to the ups and downs with my CIDP. It’s been a learning experience for me. Trying to also learn my limits and how to manage the ‘new normal’. I was diagnosed at the end of June.