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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PMFJI but I can offer a couple of comments.
So far, any trial data, both for SPMS patients or those experiencing an exacertbation, show that Tysabri doesn't help in those situations. The fact that the patient has suffered from multiple infections since being on the drug also indicates this is not a good MS medication for him.
But what your friend is experiencing in the world of medicine is very typical. My wife spent her entire working career ( close to 30 years) in medicine and saw what happens often in this area. The medical profession is loathe to tell a patient what to do if another doctor has originally prescribed something, Thus his new neuro is keeping the same course and the infusion center nurses, even though they know better, will not tell this patient to stop treatment. Instead of sitting down with the patient and reassessing the situation, they don't for fear of being accused of interfering. It's a ridiculous predicament to be in and until your friend "demands" consultation and action I'm afraid things won't change.
Harry