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Thread: TOTAL PML CASES in MS PATIENTS ON TYSABRI

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    Distinguished Community Member agate's Avatar
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    Default TOTAL PML CASES in MS PATIENTS ON TYSABRI

    The "internal source" Website, chefarztfrau, has listed 7 new PML cases in MS patients taking Tysabri.

    This makes a total of 157, up from 150 cases at last report.

    No more information is available yet as far as I know.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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    Distinguished Community Member SalpalSally's Avatar
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    Thanks for keeping us all informed, Agate..:)
    Love, Sally


    "The best way out is always through". Robert Frost







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    I will have my 43rd infusion on September 14th. It's good to stay informed, agate. Thank you.

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    Distinguished Community Member agate's Avatar
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    JTwin, I'm sure you realize that a person's chances of getting PML while on Tysabri are still very, VERY low.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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    Yes I do know that my chances of getting PML are still very low
    but I like to stay informed and appreciate this information.

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    I am coming up to three wonderful years on Tysabri - and yes I know that the risks are pretty low, but as JTwin said. it is good to be informed.

    Thanks Agate - keep up the info stream.

    Lyn

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    I agree, it is good to be informed and I think it's too bad that Biogen doesn't seem to agree with that. They aren't giving out the information regularly any more, and if it wasn't for that German link, the raw numbers wouldn't even be out there on a regular basis.

    Cherie
    ''In the last analysis, we see only what we are ready to see, what we have been taught to see. We eliminate and ignore everything that is not a part of our prejudices"

    Jean-Martin Charcot, 1825 - 1893

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  15. #8

    Default Biogen

    Biogen posts the numbers once per month. They have to verify the claims of new cases of PML before they release them. I know because I fought for this with Biogen. Many of us fought for this. We are also working with Biogen on releasing more information with violating HIPPA.

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    Distinguished Community Member agate's Avatar
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    JTwin, I recall a while back that there was a campaign to get Biogen to release the information about new PML cases, but since then Biogen seems to have restricted the information so that it's not available generally. Please correct me if I'm wrong?

    If it's posted on Biogen's Website, I'm not able to find it, but that could be my problem, not theirs. Maybe it's available only on one day of the month? Or maybe only to participants in the TOUCH program?

    Tysabri users probably have a keen interest in having this information as it comes along, but other people who might be considering Tysabri are interested in it too.

    I hope you'll let us know how to get the information more officially from Biogen. I'm sure everyone appreciates your efforts on behalf of more transparency from Biogen!
    Last edited by agate; 09-10-2011 at 11:10 AM.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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    Distinguished Community Member Frog42's Avatar
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    I looked for it too, Agate, and I couldn't find it either. I guess you must have to have to be using Tysabri to have access to those stats.
    Last edited by Frog42; 09-10-2011 at 11:47 AM.


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