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What's Your Stance On Tysabri?

Submitted by art on Wed, 2005-04-06 12:28.
Don't bring it back
14% (63 votes)
I'll take it if it comes back
15% (69 votes)
I'll wait a while (if it comes back)
41% (183 votes)
I'd take it now if I could
30% (135 votes)
Total votes: 450

Tysabri

Submitted by Anonymous on Wed, 2005-04-06 20:18.
Yikes, I voted wrong! Didn't see choice #4. I would take Tysabri right now if I could. I am willing to risk death to stop/reverse MS.
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Medication risks are unknown

Submitted by mspatient on Thu, 2005-04-07 21:52.
Is it really Tysabri alone that presents the biggest risk, or should we (the medication taking MS community) be more concerned about the all of the immunosuppressants we take over a life time? I've had MS for six years, diagnosed at 24. I had one does of Tysabri before the "recall". I gave up on self injections almost a year ago due to injection trauma (three years copaxone, two years Rebif), and thought Tysabri was going to be the drug for me. Now, I'm not so sure I want to take anything. Bee venom and the Swank diet are starting to look more reasonable! I guess I'm off to *another* hypnotherapist to see if I can get over the aversion to self injections. I'm not paranoid about drug company deception, I just don't think anyone really understands the risks/tradeoffs of these powerful medications. Another six months isn't going to change that!
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Re:Medication risks are unknown

Submitted by Kris on Mon, 2005-04-11 15:18.
I agree with you. I was diagnosed 2 years ago with RR MS and had been on Rebif until January when I had 2 doses of Tysabri. I felt the best I ever had on the Tysabri and was devastated when it was taken off the market. Now, I'm scared to go back on the Rebif (as I did not like the injections, skipped them often, and didn't get any relief from my symptoms while on it). I know I need to be on something to stop the progression of this disease, but am scared to make a move. I feel ike my body has been dump for all of these drugs oever the past 2 years and need a break. I currently just take Neurontin for pain in my left arm (got off Lexapro due to 24 pound weight gain last year)so I only have one foreign pill going into my body twice a day. Not sure what to do from here......
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Re:Medication risks are unknown

Submitted by ProfessorSy on Mon, 2005-04-11 20:18.
ask or tell your doctor to put you and methotrexate.....we tried the ABC's and had nothing but days of misery ..... methotrexate hasn't cured anything but it has stabilized the MS....good luck btw...Israel uses methotrexate as the first drug for MS
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Tysabri

Submitted by Anonymous on Fri, 2005-04-08 14:05.
It is certainly unfortunate that the drug had a fatal adverse effect, but where would advancements in medical science be if the drug companies weren't able to trial these drugs? Would we have medicines to treat cancer, diabetes or even any of the ABCR MS drugs? Think about it. I'm sure the company will go back and research a lot more, and hopefully we'll see Tysabri back again...under a different name I'm sure.
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Tysabri

Submitted by Anonymous on Tue, 2005-04-26 11:44.
Wish my insurance approval had been quicker...was supposed to have tried it. Now I just found out I have built up antibodies to Rebif so all the ABCR's are out for me as Copaxone didn't work for me either and all the rest work on the same principles as Rebif. I feel like I'm in a war with no army. I hope Tysabri comes back soon. I'm scared.
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art's picture

Re:Tysabri

Submitted by art on Wed, 2005-04-27 07:47.
So-called "neutralizing antibodies" (NAbs) are not yet definitively shown to actually be "neutralizing." If you are still having regular relapses on an Interferon, you are probably not responding, but the mere presence of NAbs should not be enough to stop taking Interferon. Has your doctor discussed switching to Avonex, which has a much lower incidence of NAbs?
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Tysabri

Submitted by Anonymous on Thu, 2005-04-07 13:09.
I've been diagnosed for 3 years now, and started taking meds this past January. When I had the discussion about Tysabri with my neurologist, he was very hesitant and said he'd rather wait it out and see what happens. When all the news hit about it, I seriously considered sending him a Thank You card.
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Tysabri

Submitted by Anonymous on Thu, 2005-04-07 17:36.
Not being on any of the ABCR drugs, I wouldn't hesitate to use Tysabri alone. The results have been so much better than with the ABCR's. Frankly, if I were on one of the ABCR drugs, I'd ask my doctor to switch me to Tysabri.
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Balancing Risk

Submitted by Anonymous on Fri, 2005-04-08 02:37.
It's about balance i.e. if I were deteriorating more rapidly I might consider riskier treatments.
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