Reply To: General CIDP – IVIG Poll
Ausvoltz, I was afflicted in 2008 with GBS/MFS/CIDP pretty much in that order. IVIg/SCIg never really helped me and I was given it in the ICU for 10 days straight. High dose prednisone along with Plasma Exchange finally stopped the progression, but the delay (2-3 months after onset) left me with permanent nerve damage in my legs and I can’t walk or stand. Rituximab helped me to recover some functionality though, but it came too late as well. I even considered the controversial stem cell (HSCT) treatment and had actually enrolled in the program in Seattle, but withdrew when I realized the costs would bankrupt me. My experience is detailed in these forums.
I have never been in any real pain nor have I had allergic reactions to any of the treatments. If SCIg seems to cause a bad reaction, it could be related to Aseptic Meningitis. More info here:
Not all brands of SCIg are the same and some forum members have reported reactions from certain brands. Here is a comparison of brands:
I hope you find a treatment that helps you recover, there are a lot of treatment options discussed in these forums.