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Old 04-28-2009, 11:56 AM #1
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lady_express_44 lady_express_44 is offline
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lady_express_44 lady_express_44 is offline
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Join Date: Aug 2006
Location: Vancouver, Canada
Posts: 3,300
15 yr Member
Default Tysabri question for RW/Cheryl/Chris/...

I know of a guy who is on Tysabri, who was originally rx'd it by a MS Specialist very "connected" with this drug. The specialist moved on, and this patient decided to stay on Tysabri. He is SPMS ... but "documented" as RRMS (no longer relapsing) so that he can stay on the DMD's.

He has a new neurologist, who knows nothing about Tysabri, and he is his only T patient. I have no idea if he is registered with the TOUCH program, but am assuming he must be ...

This guy has been sick several times while using Tysabri; with infections, on antibiotics, etc. Every time he tries to ask his neurologist any questions, he just blows him off. The infusion center staff, who are supposed to ask the 4 questions before infusing, refuse to give him any advice on whether he should proceed. Biogen has been less than helpful too ...

Should he be getting his infusion while ill with infections?

Does the infusion center have any responsibility on advising him whether he should proceed with an infusion?

How does he find out if his neurologist is even registered with TOUCH, and do you know what the training is for those neurologists who are?

I think he should find a more experienced neurologist, for sure, but I guess that's not an easy option for him (not sure why).

Any suggestions?

Thanks, Cherie
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