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

February 22, 2012 at 12:40 am

lots of great info—thank you everyone ๐Ÿ™‚ I’m glad to see the site picking back up again. I am scheduled to go for another loading dose of ivig thurs and fri this week. Maybe i will see a better response from it this time since I have had the PE??
I plan on asking my Dr next month about why she decided against the rituxin —possibly trying some sort of immunosuppressant— Why she doesnt think i should try another round of PE? — if she feels i should stay with the ivig –then maybe add something with it??? Im sure i will have more ?s by the time of the visit.
I have even considered calling Dr Dycks office myself to see if he would return my call and talk to him about what I should try next. I only saw him the one week in June. Would love to have him as my ongoing Dr but it’s really not practical flying out to minnesota every time i have an appt.
I did really have my heart set on the PE working for me–and would have been happy with even minimun improvement ๐Ÿ™ but i guess that’s the whole thing with this disease—-finding what works through trial and error. So far the only thing that made me worse was the prednisone, the ivig and PE didnt make me worse. The ivig did help with my fatigue, but no strength increase.
But yess…I will continue fighting this horrible disease–coming up on three years in june since i was diagnosed and started treatment. i really thought I would have it figured out by now. Maybe the immune system will just burn itself out—I read someplace that , that can happen—-wishful thinking ๐Ÿ™‚