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Thread: TOTAL PML CASES in MS PATIENTS ON TYSABRI

  1. #41
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    I have a close friend who has been on it since it first came out and now has been tested positive for the JC virus. She and I had the same neuro who is the medical director of the MS Center. He actually did lose it and turned and walked out of the room when he was only offering me Tysabri and I did not want to take it. Her husband bought a lot of stock when it first came out so she is being pressured from both her husband and her doctor.

    I do worry about her as she has been on it as long as anyone maybe 5 years soon but I don't want to let her know as she doesn't need the extra stress.

    Gabriella:angel:
    Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
    Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

    "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon

  2. #42
    Distinguished Community Member renee's Avatar
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    Biogen common stock hit about $75/share when Ty came out.
    A week later it was below $40/share.

    BIIB is now selling for $118-120.
    Sell. Wait for it to dive again, buy low.
    It's a dive and riser.
    It may not be Apple stock in increased value but how bizarre
    to make health decisions on any stock.

    I don't like one choice med zealots practitioners..
    Inexcusable behaviour on the neuro's part.

  3. #43
    Distinguished Community Member agate's Avatar
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    Default 6 new PML cases as of February 1--total now 207

    Biogen reports a total of 207 confirmed cases PML (Tysabri-related) worldwide as of February 1, 2012--an increase of 6 cases since the last report. Of the 6 new cases, 4 are in the US. Of the total of 207 cases, 79 are in the US.

    The death percentage is now 21% (44 deaths). On 12/21/11 the percentage was 20%.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  4. #44
    Distinguished Community Member SalpalSally's Avatar
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    I hope your friend dicides to stop Tysabri. It just isn't worth the risk for her now...IMHO!
    Love, Sally


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







  5. #45
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    Default Too much!

    I think she is staying on it Sal. The thoughts of "what if" are too great for her to stop after this long. I spoke to her the other day and she was telling me of the reports of patients she has talked to in the waiting room who have been bedridden or in wheelchairs but are now walking.

    She has not improved and is still in a power chair in her house. I just don't know how she can deal with the knowledge that she has the JC virus and she could get PML at any time. She did not read anything when she started on it and just trusted Dr. Mengele (my former neuro) to tell her about the possibility of getting PML (which he didn't).

    I can't stand the man as he is a BigPharma (Biogen-Idec) drug pusher to the exclusion of all others. I wonder how many dollars have been put in his pocket by that company?

    Gabriella
    Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
    Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

    "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon

  6. #46
    Distinguished Community Member agate's Avatar
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    More information on cases 201-207:

    #201 - US - Female - 56 doses
    #202 - US - Female - 61 doses
    #203 - France - Male - 42 months
    #204 - Czech Republic - Female - 31 months
    #205 - US - Female - 47 doses
    #206 - US - Male - 43 doses
    #207 - US - Male - 59 doses
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  7. #47
    Distinguished Community Member agate's Avatar
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    Default 5 new PML cases--total now 212

    Biogen Idec's latest figures:

    212 PML cases in MS patients on Tysabri. There have been 46 deaths.

    Some information is available about the new cases:

    #208 - Finland - male - 46 doses
    #209 - Italy - female - 25 doses
    #210 - France - male - 45 months
    #212 - US ? ?

    As of 12/31/11, 95,000 persons had received Tysabri in the post-marketing period.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  8. #48
    Distinguished Community Member SalpalSally's Avatar
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    Agate, do you know how many are actually on Tysabri now..at this moment?
    Love, Sally


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







  9. #49
    Distinguished Community Member agate's Avatar
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    I asked for that information when I called, but that was the most recent figure they had. I'll call again and see if they've updated it.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  10. #50

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    neuro wants me to start this - need the jc ab test 1st. it's so hard to balance the possible miraculous benefit against the possible hellish downside. then there's this - dr. wahls, on her wahls foundation site, addresses tysabri : can lower the risk of new brain lesions by 60% -- but it does not eliminate the new lesion risk. see the rest of the post, which addresses drug immunosuppression at <https://www.facebook.com/pages/The-Wahls-Foundation/150956531629073> posted on thursday @ 10:01 p.m.

    actually, the inventor of the drug warned of these bad effects, even before it was fda approved - from 2005:

    http://news.stanford.edu/news/2005/m...an-030905.html


    kind regards,

    H.

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