Ken/IVIG/PP/from Beth in Florida
AnonymousJune 13, 2008 at 2:15 pm
Ken, I was dx in Nov of 2007 and nothing helped me for months on end. I was on IVIG, Prednisone, Cellcept, and Arava at the same time. The Prednisone was a failry hefty dose of 80 mg a day and I continued to go down hill. CAne, Walker, Power Chair, shakes all over body and the pins, needles, pain, elctectric shocks and numbness
I was started on Plamsphresis three months ago and go monthly and have started showing some signs of improvement. I am now walking in the house without a walker.
My Plasmaphresis started out at a 1.4 exchange and now is a 1.2 exchange. I go every other day for none days. Comes out to five PP treatments.
I’m also on Prednisone 70mg aday and Arava 20 mg. The Cellcept eas discontinued.
My Neuro MD has been getting fairly aggressive with my treatment, I’m still not stable. I see him on the 23rd and he will tell me if he is going to put me on a schedule for phresis.
I’m glad you are going to go to a different MD. This syndrome is hard to get in control or keep in control.
Will have you in my thoughts and prayers.
June 13, 2008 at 6:26 pm
How ARE YOU doing? Things holding up? I assume you must have read my post to Ken, thanks for responding and sorry I messed your members name up. I could not remember ALL of your history but did remember you have had quite a trial and error period. It was kind of you to reply in such detail. I hope you were not mad I used your name, I just thought Ken could use some up beat advice from you as you are always positive!!!!
Dawn Kevies mom
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