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Old 10-28-2009, 08:16 PM
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ewizabeth ewizabeth is offline
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Join Date: Sep 2006
Location: northern Illinois
Posts: 5,258
15 yr Member
ewizabeth ewizabeth is offline
Elder
ewizabeth's Avatar
 
Join Date: Sep 2006
Location: northern Illinois
Posts: 5,258
15 yr Member
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Quote:
Originally Posted by Edife View Post
Please dont make them stop prescibing Tysabri cause i'm progressing in the worst way past 9 months on Copaxone, Rebif, back to Copaxone, supps ect.
I'm history in 12 months at most if Ty doesn't slow it down.
Nobody wants them to stop precribing Tysabri. We just want to know what the risks are. They were providing the details of the PML cases to the patients but they don't do that anymore. If they're keeping side effects from us, especially deadly side effects, we can't decide if it's safe for us to take it.

Many of us have been on Tysabri for a long time and we need to know the statistics of those who get PML so if we find ourselves in a high risk group, we can either take a break or switch to a different therapy.

I want Tysabri as an option, but they need to be honest with the patients if they want us to relax on this subject. I hope you can take it and get good results. We want it to be safe though, and that includes for you and anyone else about to start taking it.
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RRMS DX 01/28/03 Started Copaxone again on 12/09/09
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