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Thread: 5 new Tysabri-related PML cases--total now 150

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    Distinguished Community Member agate's Avatar
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    Default 5 new Tysabri-related PML cases--total now 150

    The chefarztfrau Website, where someone in Germany who has access to an internal source has been listing Tysabri-related PML cases, has been updated to show 5 new PML cases since early July, with the total now at 150.

    One of the new cases is in the US but the location of the others isn't given.

    You can see the list here.

    Here is a link to the most recent thread about this from the old board:

    http://74.220.207.183/~braintal/arch...d.php?t=108876
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
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    Distinguished Community Member Frog42's Avatar
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    Isn't it interesting how Biogen does not provide this info to patients and people have to dig around for it. Makes me wonder what they're trying to hide.


    Whatever happens around you, don't take it personally. Nothing other people do is because of you. It is because of themselves. -- Miguel Ruiz

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    Distinguished Community Member agate's Avatar
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    And it's getting harder to find the information too. It used to show up on financial Websites but not so much any more.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
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    This is really getting to be a regular thing it seems to me. I guess it is because so many people have been on it longer.

    Virginia
    Virginia

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    Distinguished Community Member Frog42's Avatar
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    Totally irrelevant aside here, but I grew up hearing German and I think about this every time I see a post about this site. "Chefarzt" translates as "head doctor" and "frau" is woman. Is the woman who runs the site a head doctor who wants to remain anonymous?


    Whatever happens around you, don't take it personally. Nothing other people do is because of you. It is because of themselves. -- Miguel Ruiz

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    Distinguished Community Member agate's Avatar
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    Vicky, I've tried to figure out where the information is coming from, too, but the chefarztfrau Website doesn't contain any clues that I've found. The extended name of the place is chefarztfraulicher:beobachter if that's any help.

    The person in charge has a man's name, but there is no more information about this person that I can find. He has access to internal information somehow and has been maintaining the list for a couple of years now.

    Virginia, this is from Market Watch, July 15, 2011:

    The overall global PML rate is now at 1.62 per 1,000 patients. Of the total PML cases, 57 were in the U.S., 81 were in the European Union and seven were in other areas.

    The company believes that the best way to assess the pool of PML data shows all patients over a fixed duration range of treatment.

    According to that method, the rate is about 1.94 cases per 1,000 patients on the drug for between two and three years. The incidence is about 0.54 case per 1,000 patients in those using it for one to two years, and it is essentially nonexistent in patients using it for less than a year.

    For patients on the drug for three to four years, the rate drops to 1.34 patients per 1,000, but Biogen doesn't believe there is enough data to conclude that incidence of the infection drops after a certain amount of time.

    Looked at another way, the rate is 2.41 cases per 1,000 patients on the drug for a year or longer, rising to 3.03 per 1,000 for those on the drug for two years or longer, and dropping to 1.85 for more than three years.
    http://www.marketwatch.com/Story/sto...4-E8151C011B01

    [EDITED to remove the name, on second thought.]
    Last edited by agate; 08-20-2011 at 12:18 PM. Reason: Removing a name
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
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    Distinguished Community Member Frog42's Avatar
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    Beobachter just means 'observer'. The 'er' is kind of like adding 's in English. Maybe that person is just pretending to be a woman. No way to know; oh well.
    Last edited by Frog42; 08-20-2011 at 04:13 PM. Reason: Seemed like a good idea


    Whatever happens around you, don't take it personally. Nothing other people do is because of you. It is because of themselves. -- Miguel Ruiz

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    Distinguished Community Member agate's Avatar
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    Whoever it is probably doesn't want much revealed because he/she would compromise the "internal source." The information about the PML cases isn't supposed to be released to the public, but every once in a while somebody knows somebody on the "inside."

    ADDED: I've gone back to my post and deleted the name just in case there might be a problem. Anyone looking at the Website can find the name easily enough, I think.
    Last edited by agate; 08-20-2011 at 12:20 PM.
    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 Cherie's Avatar
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    A friend in FL was diagnosed this summer and I thought she was #131 but the site you posted has no one reported since May 7.

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    Question

    What were your friend's symptoms? How is she doing now. Is she expected to recover much? What was her treatment for PML?

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