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Originally Posted by lady_express_44
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.
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Tysabri can be rx'd for SPMS but if his doc is going to allow the continuation of Tysabri, then that's between him and the doc. Paperwork is paperwork, we all know that!
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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 ...
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I find it hard to believe that a neurogolist knows nothing about Tysabri since it has been openly on the market since November of 2004 in the US and all the publicity it has received since March of '05. This doc must live in a vacuum not to know "nothing" about it. He must choose not to be educated. I would "run like a bunny" if I was his patient.
As RW said, in order to have a Patient receiving Tysabri, he MUST be enrolled in the TOUCH protocol so his lack of knowledge is self proclaimed and he is lying to his patient. There are those neurologists who choose not to rx the drug and therefore remain ignorant.
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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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If the patient is ill, running a fever, has any concerns at all while getting ready to receive his infusion and cannot answer yes (or is it no, I don't remember) to all the questions, then the infusion center has a duty bound obligation NOT to infuse. Or get the prescribing neurologists permission to override. They can lose their certification.
It's pretty clear on the form what their duty to the patient is...
If it were me...I would not jeopardize my health because the doc wants to hide his head in the sand.
I would be looking elsewhere and fast. I would also be contacting Biogen directly and bypassing MsActivesource.
You want email addresses or phone numbers?