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Possibly quitting Tysabri??

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    Possibly quitting Tysabri??

    Hi,
    I saw my Neuro last week. I've been on Tysabri for almost 6 years now and haven't had a relapse or any real changes on MRI in that time.

    She told me that new research has discovered that the JCV Titer numbers tell more than they thought at first. She said that my numbers are considered high - June was 3.15 and December was 2.79.

    She told me that most doctors would automatically pull me off the Ty. She gave me the drug info for the 2 oral drugs, said that she wouldn't want me back on a CRAB drug.

    She also told me about a new one that's not approved in the US yet but it has been approved in European countries and she thinks it will be here soon, too. Her office staff gave me the name "Laquinimod" for that drug but that seems wrong.

    I did research on that drug but that's an oral drug. She was telling me about a 5 day infusion the first year and the next yr a 3 day infusion and that's it.

    Does anyone know what that drug is? I kind of want to stay on the Ty but don't know what to do. Anyone have an issue like this and stay on the Ty??

    Thanks!
    Jenn
    Jenn-- Proud mom to 2 boys. The teen who drives me up the wall and the 1st Grader who makes me laugh every day.

    #2
    Just a reminder: Both Aubagio and Gilenya are immunosuppresants so you need to be careful switching from Tysabri. There are wash-out guidelines that your neurologist should cover with you.

    Laquinimod was once a medication many people put their future hopes in. It was fast-tracked by the FDA and was due to be the first oral MS medication. In clinical trials, Laquinimod failed to satisfactorily reduce relapses, but did appear to slow disability progression and some brain atrophy. The drug has immunomodulatory, anti-inflammatory and neuroprotective properties. After being denied by the US FDA & EU the drug was no longer going to be tested for RRMS and SPMS. If I remember correctly, Laquinimod is still be tested for CIS patients and Crohn's patients.

    She was telling me about a 5 day infusion the first year and the next yr a 3 day infusion and that's it.

    This drug is Alemtuzumab, trade name Lemtrada, (formerly Campath) that was recently denied by the FDA, but is available in Europe, Mexico, Brazil and a whole host of other countries. The FDA rejected the drug stating the drug company had not proved benefit, had significant safety concerns and there were errors in the drug trials and compiling the data. Since then a backlash from patients, neurologists and some MS non-profits has been levied at the FDA. Genzyme was expected to appeal the FDA ruling, but has now announced they would resubmit the entire package to the FDA specifically addressing the concerns the FDA raised.


    I hope you find the right answer for your situation. As the months go by, more and more long-term Tysabri users are going to be faced with the same thing.

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      #3
      Thank you so much for the info! It really stinks that the med my neuro was so excited about isn't going to be approved right now. I'm not excited about either one of the newer oral drugs, I think I'd rather just go back on Avonex. I will keep looking for information, I don't see her again until June 23, I have some time...
      Jenn
      Jenn-- Proud mom to 2 boys. The teen who drives me up the wall and the 1st Grader who makes me laugh every day.

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