Tysabri patients..if you were asked..?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Tysabri patients..if you were asked..?

Postby PCakes » Mon Sep 27, 2010 8:41 am

Good morning all..

A friend of a friend of a friend called me. Long term, more than 7 years on tysabri. Was in the original trials at early onset and has done very very well. No progression.
Now this person is looking for info on CCSVI. We are meeting for coffee later this week. I only plan to share known facts.
I would like to hear from other's out there in similar circumstance.. if Tysabri seems to be working for you? What do you make of CCSVI? Are you considering venoplasty?

Thanks much..pc
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Postby Briggie » Mon Sep 27, 2010 2:55 pm

Hi,

I was diagnosed almost 4 years ago. I spent almost 3 years on ReBif, and my neurologist wasn't happy the last year of it w/ my MRI scans, and I was getting worse, so he talked me into Tysabri. I've been on it a year now.

Honestly, I hate being on Tysabri. It's not a problem w/ getting the IV's. I just think it's a "dangerous" drug w/ lots of known side effects, pretty serious ones. Right now my ins just switched, and we're having trouble getting me signed up on the new ins, and I don't really care, because I don't want to be on it! LOL

But if your friend has had good results from Tysabri, then that's probably not much help.

I should say that I've had 2 MRI's since starting Tysabri, and my neurologist was happy w/ the scans, but I don't feel any dft. He couldn't believe it 6 months ago when he saw the scans and assumed I was doing great and walked into the exam room saying, "So! How do you feel?" and I said, "Exactly the same."

I should also say that he diagnosed me w/ RRMS, and I have always felt that that was wrong. Personally, I think it's PPMS (if you don't know the difference, I can explain more later). That may have something to do w/ it. I'm on drugs because I'd rather do something than nothing, but I don't really like the Tysabri.

I'm scheduled to go to Albany in mid-Oct for testing and possible treatment for CCSVI. I'm trying to keep that separate in my head from the question of whether or not I should stay on drugs. I think most (although I have no idea of the #'s) people who get the venoplasty stay on their drugs. So it's not definitely an either/or situation. You can do both.
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jc

Postby wobbly » Mon Sep 27, 2010 5:00 pm

there is a jc virus test that has come out so they can see your chance of pml / i had the test which was neg so thinking most 4 sure 2 go back on ty / also i was balloned 2 yrs ago in jan / seems like the best drug was on 4 36 doses/ but with this new test u can find if u can get pml/ stay strong all 8) 8)
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