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Thread: TOTAL PML CASES in MS PATIENTS ON TYSABRI

  1. #101
    Distinguished Community Member agate's Avatar
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    Default New figures

    This is from Biogen. As of 6/30/13 there have been 118,100 patients who have ever taken Tysabri.

    As of 8/6/13, there have been 395 confirmed cases of PML among those patients (including 2 patients with Crohn's disease). Of the 395, there have been 111 men and 184 women, and 131 of the cases have been in the US.

    This is an increase of 23 cases since the last posting of this data (early July).

    Of the 395 cases, 95 have died--a death rate of 23%.

    The surviving patients have disability ranging from mild to moderate to severe.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
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  2. #102
    Distinguished Community Member SalpalSally's Avatar
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    I'd hope those patients suing would clean Biogen's pockets, but
    they will make the other TY patients pay for it..grrrrrrr.
    Love, Sally


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







  3. #103
    Distinguished Community Member agate's Avatar
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    Biogen Idec isn't coming up with the statistics on PML very readily any more. A month ago they still hadn't updated them since the last update (early August 2013). And today they had no totals and no figures on deaths but there was this information:

    As of 9/30/13, a total of 120,500 people have ever taken Tysabri.

    As of 11/5/13, the overall incidence of Tysabri-related PML among those people is 3.4 per 1,000. And 77% of those diagnosed with PML are alive, with varying degrees of disability.

    An informal source that has been consistently reliable for years lists 423 PML cases as of 12/3/13.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
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  4. #104
    Distinguished Community Member SalpalSally's Avatar
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    Agate, you may want to check out ehealthline.com for more info. A rather new site
    with great info.

    On Jan, 2, 2014: 90,291 people reported to have side effects when taking Tysabri.
    Among them, 2,583 people (2.86%) have Progressive Multifocal Leukoencephalopathy.

    http://www.ehealthme.com/ds/tysabri/...encephalopathy

    Also... https://www.facebook.com/notes/ccsvi...51730298782211
    Last edited by SalpalSally; 01-10-2014 at 01:32 PM.
    Love, Sally


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







  5. #105
    Distinguished Community Member agate's Avatar
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    Thanks for finding and mentioning the Website. I'm having some problems finding out just who wrote the article though. It says it's "by eHealthMe on Jan. 2, 2014" but it would be good to know who the author is--name and qualifications.

    I'm afraid I'm more inclined to trust Biogen Idec's figures, which are quite different from those at eHealthMe. 423 PML cases--that's very different from 2,583 cases.

    Also, if you look at the charts given in the article, there are tiny asterisks, and they refer to these notes, which you can find only if you keep on scrolling down the page and using a magnifier:

    * Approximation only. Some reports may have incomplete information.
    ** Reports from social media are used.
    Maybe this Website has information that Biogen doesn't have, but if it does, it ought to have more references to show where it came from, seems to me.

    EDITED TO ADD: Your second link shows that the figures are based on the Adverse Event Report. I recall discussions of this report on another board back when Tysabri was being taken off the market for a while, and it was pretty well established that relying on Adverse Event Reports isn't going to give an accurate idea of the "real" adverse events because anyone can file an adverse event report, as I understand it, and many of them turn out to be unsubstantiated.
    Last edited by agate; 01-10-2014 at 02:40 PM.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  6. #106
    Distinguished Community Member agate's Avatar
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    Default Study of PML under way

    The latest (Winter 2014) issue of NARCOMS Now contains an article by the researcher in charge of an NIH clinical study "currently enrolling patients":

    http://www.clinicaltrials.gov/ct2/sh...erm=PML&rank=5
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
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  7. #107
    Distinguished Community Member SalpalSally's Avatar
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    I think I choose to believe the outside investigating source, rather than
    an insider Company, that has been known to skew the results in their favor.
    Love, Sally


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







  8. #108
    Distinguished Community Member agate's Avatar
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    It's up to you, of course, Sally. One of the great things about this board is that people can choose what information and opinions they want. The information and opinions are presented for your consideration.

    I think it's significant that Biogen is now opting not to be so forthcoming about the PML data. They're saying they "don't have" the data if you ask for it. Actually they do have it--but the person on the phone when you call doesn't have it handy.

    I have the feeling that they've trotted out Tecfidera and are hoping to get everyone interested enough in it so that they can shove the PML information far, far into the background.

    If I recall earlier statements from Biogen, they weren't at all concerned about PML so long as the incidence stayed below 1 case per 1,000.

    Now it's at 3.4 cases per 1,000. I'd say Biogen probably has cause for concern.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  9. #109
    Distinguished Community Member agate's Avatar
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    Here's a December 2013 table showing the risks of developing PML if you're someone with MS on Tysabri.

    http://www.slideshare.net/gavingiova...guide-dec-2013

    The chart was posted by Dr. Gavin Giovanonni, Professor at Barats and the London School of Medicine and Dentistry in the UK.
    Last edited by agate; 01-11-2014 at 08:01 AM.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  10. #110
    Distinguished Community Member Cherie's Avatar
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    I just checked out your link Sally and the page has expired and report pulled down. I thought it looked like a great resource but, alas....

    However, when I searched Tysabri, this came up...

    http://www.ehealthme.com/quick_search/tysabri
    Last edited by Cherie; 01-13-2014 at 03:29 PM.

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