Quote:
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.
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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Cherie,
Tysabri is approved for RRMS and SPMS with Relapses and use in the US requires TOUCH enrollment by the patient, the doctor, and the infusion center. Tysabri has not been studied in SPMS patients so the benefits with this patient population are unknown/unproven. If your friend has continued to take the drug, I'm assuming they/their prior Doctor felt it was providing a benefit vis a vie the risk.
As far as infections and what to do, your friend really needs to consult with a Doctor who can provide guidance based on knowledge of the infections. I personally would get a new Neurologist. My experience is limited as I haven't had any infections at the time of my Tysabri infusions. I've read other posts where patient infusions were just delayed (by a week or so) until the infection had been brought under control by antibiotics. This would certainly be the most cautious route and the route I would take absent any professional input.
Chris