Welcome…

Anonymous
August 21, 2007 at 11:02 am

First off I would like to welcome you to the forum, post often & ask as many questions as you need to; there is a wealth of experience here from people who have or have had GBS & CIDP. I am a person who had a very severe case of CIDP, but was refractory to the standard treatments. I read your post a couple of times & do feel like it sounds like CIDP. Your onset was too slow for it to be GBS, & you seem to fit the pattern of relapsing remitting CIDP. When you are given monthly IVIG does it bring you back to almost normal, if you were on a steady monthly schedule? If so, it probably is CIDP.

As far as treatments, IVIG seems to be the best, but solumedrol is now recommended as the first choice of treatment for CIDP at the University of Minnesota, probably because of the much lower cost. But it only worked two days for you? From my experience Plaspheresis usually doesn’t work as well as IVIG for CIDP & is just as expensive a treatment. Also, I was one who had both in the same day every Friday for 12 weeks, & it did nothing for me. I wish there was something I could recommend for you for the cost of IVIG, as I know how pricy it has gotten, but maybe there are others who could help you out there. But it does sound like what you need is monthly IVIG, even one infusion per month. What is your present condition?
Pam