new member/cidp

March 23, 2007 at 8:27 pm

Hello…I’m new as well. However, I have noticed that I have had a lot of the same problems as others. I have rapid relapses…every two weeks or so. Sometimes I can utilize my arms & legs a little and sometimes I am paralyzed from the throat down. I’ve tried all kinds of treatments. I did IVIG for awhile and like you, it initially worked. However, it stopped being effective after a little while. I also tried plasmapheresis. It worked for awhile and then started to work against me. Now I get one plasmapheresis every other Friday and I get an IVIG the day after the plasmapheresis. This combination has done really well for me. I haven’t been paralyzed from the throat down in several months and I’m starting to gain some strength back to the point I can hobble around with a walker for short distances in the community. The plasmapheresis used to make me really sick, but the docs found out it was the smell of the citrate. Now they literally have me eat lifesavers throughout the treatment and I am fine. I also had problems with the IVIG, but now I am premedicated with tylenol and an injection of 25mg to 50mgs of benadryl a half an hour before the infusion. The infusion is run really slowly and now I don’t have any problems. I guess I should say that I do take 1000mgs of cellcept. I tried imuran and rituxin, but they didn’t work. In fact, the imuran caused some blood problems. I hate drugs, so I’m glad my doctor was open to trying a combination of plasmapheresis and IVIG.

Well…just thought I’d reply. Hang in there and don’t be afraid to have your doctor try various methods to keep the CIDP at bay.