Reply To: need spome advice on this cidp rollercoaster ride??

February 19, 2012 at 12:38 am

Lori it sounds like your doctor is not all too familiar with CIDP and was not trained for dealing with it. There are neurologists out there that have had special training in the diagnosis and treatment for GB and CIDP. I can honestly say that I did not react well with my first treatment of IVIG and cannot have it again. My first session of plasma exchange did not work for me either. Nor did the oral prednisone. What did work was large doses of prednisone by IV. I did have a relapse, and that was handled with plasma exchange and the iv doses of prednisone which did very well together. We all wish that we would have an extremely immediate improvement with treatment, but that does not necessarily happen in that way. After treatment I saw slight improvements daily but did not see a very significant improvement until about a week or more after treatments ceased. We are all different in how we respond to treatments and what may work for one may not work for another. I know this may not be the answer that you want to hear, but try to keep an upbeat attitude and keep asking questions! 🙂