Reply To: For those who get regular IVIG infusions, how often do you get them?
The comments here (and in other threads) about IVIG frighten me. I had my first round of 5 infusions in March — a very high dose because I have severe CIDP, with a lot of nerve damage in my legs, and was having near-constant stabbing nerve pains down my left leg in particular, so bad that my leg would buckle under me numerous times a day. After the first round of IVIG, the worst of that pain was gone. But I am still so weak and bone-deep fatigued that I can barely make it across a room with the help of a cane. If I try to stand up for more than three minutes, soon I’m trembling all over and drenched in sweat. I can’t do much of anything. I don’t have the strength to go anywhere. I’m now taking my second round of 5 high-dose infusions, and I’m concerned, after reading some of the comments here, that I’ll never regain my strength and get my life back. I’m a professional novelist, and I feel so awful all the time that I haven’t written a word in a year. Just getting to my office and my desktop computer is an ordeal. If this second round doesn’t help at least a little with the fatigue and weakness, I don’t know what I’ll do. My insurance isn’t going to approve a switch to PE. They take a hard line with expensive drugs.