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

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

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

Thanks Harry and Chris.

Chris, as I mentioned in my first post, he is full blown SPMS, and does not have relapses/remissions any more. He's gotten around it with the phoney classification, but Tysabri would not be approved for him otherwise.

I agree that he should get a new neuro. This guy says his neuro "hasn't even read up on Tysabri", so I just don't see how he could be a registered through TOUCH. :cool:

I guess changing neuro's isn't a good option for him . . . but I will reiterate that.

Thanks, Cherie

If this person is in the USA, he is under the TOUCH program. That means that the Tysabri prescription has to be renewed every 6 months. That means the doctor and infusion center have to be TOUCH certified.

If he has no confidence in his doc, he should find one that he DOES have confidence in.

I can't imagine going through all this without the doc on my side and alert to what is going on with my treatment. While my neuro doesn't treat my general medical problems, he would consult with my GP as to what is going on and what to do about it, since he knows more about the drug than the GP does.

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!

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.

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?

Thanks, RW and Cheryl.

You are right, Cheryl . . . "paperwork is paperwork". I found out this neuro is not TOUCH certified, but his old MS Specialist left a 6 month rx on file so that the patients wouldn't be imminently affected by him leaving. Not sure what's supposed to happen after that, but I guess he will have to look for another neuro or quit anyway.:cool:

There are no neuro's that are Tysabri-literate, close to where he lives in CA, but perhaps he can travel to find one.

He has worked with a case-worker (at Biogen?, or the infusion center?) to no avail. He says he can never get a straight answer out of Biogen anyway, as his neuro is supposed monitor him ...

He postponed his infusion during this infection. Not sure where he'll go from here.

Thanks for the information.

Cherie