mewly diagnosed, starting tysabri?

A board to discuss the newly-released drug Tysabri, (formerly known as Antegren) as a treatment for Multiple Sclerosis

mewly diagnosed, starting tysabri?

Postby downtowner » Thu Sep 09, 2010 5:56 am

Hi,

I was diagosed with MS in febuary this year. I've been on copaxone ever since. At my last neuro apointment I was told that copaxone is not working for me and that there is still activity. My MS is agressive. This scared the shit out of me. I had to miss my first day of school to go to my appointment and was given this terrible news. The worst part is that my neuro didn't even look at my MRI but just looked at the technitians notes. I've read some bad things about tysabiri but also some good. The bad things are pretty scary. Any advice from people who have been on it.
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Postby Jnet1589 » Sat Sep 11, 2010 8:14 am

I've been on Tysabri for a few years now, and while I understand your concerns, I have had no problems. No miracle cure for me, But Copaxone stopped working for me, so then they had just taken Tysabri off the market at that time,They put me on Rebif while I waited. Rebif made me sick at first and it didn't help . now I've been on it. For me, it's like not taking a med for your MS because you go once a month, the nurse does the infusion, I watch TV then I go home. I wish you the best of luck and God Bless.

Jeanette
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Postby turbotaguy » Sun Sep 12, 2010 6:13 pm

I was on Tysabri early on but stopped when the number of PML cases got so high. When I started Tysabri there were no cases of PML and no deaths (other than the trials). Now there are roughly 60 cases of PML and a dozen or so deaths. That is nuts. I don't think there is another drug out there with that track record that is still being used. I can't believe it is still on the market.

Don't take this the wrong way, but I think newly diagnosed people are crazy to consider Tysabri, but it really is just a matter of what you are comfortable with. I just about couldn't sleep at night thinking about PML.
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Postby kirsty23 » Mon Sep 13, 2010 3:52 am

What does PML stand for??
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Postby Algis » Mon Sep 13, 2010 4:01 am

Progressive multifocal leukoencephalopathy

http://en.wikipedia.org/wiki/Progressiv ... phalopathy
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Postby Jnet1589 » Mon Sep 13, 2010 8:52 am

What are you taking if you're not taking Tysabri. For me, there is no other option, beside Chemo stuff. So, I am watching the new stuff that the FDA is waiting to approve. So far, I have no side effects from Tysabri, and it has been the easiet DMD I've been on. I get checked for the JVC virus all the time.
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Postby AngelaO » Mon Sep 13, 2010 9:19 am

When i was first dx i told myself i would never go on ty because the risks were too great. I failed rebif and copaxone before my neuro suggested it. And honestly now that im on it it doesnt bother me so much. What it really comes down to is does the benefits outway the risks. Personally I would try one of the interferons before going on ty. Good luck in what ever you decide
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Postby turbotaguy » Mon Sep 13, 2010 2:10 pm

It is all a matter of what you are comfortable with. I agree there are benefits. Tysabri works very well that is why it is still around. But, PML is scary stuff and I couldn't stay on it. I am now on Copaxone and a vegan diet with supplements. I am doing as well as I was on Tysabri but no scary elephant in the room that nobody wants to think about.
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dx 1998 now 48 doses of tysabri...

Postby Bodie » Mon Oct 25, 2010 3:43 pm

When interferon stopped working for me I had two doses before it was taken off the market. Once it came back I jumped at the opportunity to get back on it. I have not had a relapse in almost four years. The other day my neuro called me to tell me that the blood work I had given tested positive for JCV antibodies. Two hours later I was in the chair getting my 48th does. I don'tknow what to do at this point.
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Postby Drury » Mon Oct 25, 2010 5:26 pm

Bodie,

Have you had regular checks for JCV antibodies or is this a new test? How do they test you is it via a spinal tap? Is this the first time you have tested positive for this? Is having antibodies the same as having the virus?
Did your neuro say it was safe to have the 48th dose? It is such a difficult situation because no one is guiding you so how can you make a decision when PML is such a scary possibility?

I have not been much help but I truly hope you get some answers asap to determine how safe it is to continue given how long you have been on Tysabri. My daughter had her fifth infusion today.

Please keep us posted.

Best,
Drury
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