anybody on avonex?
AnonymousNovember 12, 2008 at 11:41 am
I Might Just Be Acting In Impatiently, But, I’m Deteriorating, Over Here. A Year And A Half Of Prendisone, 7 Treatments Of Ivig, Going On4 Months Of Cell-cept And The Cidp Appearsto Be Causing Instability In My Thoracic Spine.
Anyway, Enough Complaining, Thanks For Listening;-)
O Go Back To Johns Hopkins, In Dec, My Local Neuro Says He’s Out Of Ideas. I’ve Seen Ereferenves To Avonex Being Tried On Cidp W Some Success, A) Anyone Have Experience With Avonex, B) Any Other Treatments I Might Suggesty W Dr ???
Peace Be W You!
November 12, 2008 at 12:03 pm
Please understand you have to investigate this further on your own, as the docs spoke very fast. I will tell you for sure that they did seem to say negative things about cell cept. Some do not even use it anymore. Said it causes cns involvement for some. that could explain your issue. I believe Tim TPJR mentioned something about the drug you mentioned. Perhaps he can help you with that. THere are other drugs they are using but they do not come without risk, check my post things I learned. About the ivig, how much are you getting and what is your schedule? Have you tried pp & ivig? Are you certain of the dx? Are there any varients possible? Write back, I will be looking for your post.
Dawn Kevies mom
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