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Thread: TOTAL PML CASES in MS PATIENTS ON TYSABRI

  1. #51

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    better post to dr. wahls link re tysabri, posted on thursday, 10:01 pm


    https://www.facebook.com/pages/The-W...50956531629073

    H.

  2. #52
    Distinguished Community Member agate's Avatar
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    I don't know much about Dr. Wahls but I see that she is selling informational materials. She seems to be a legitimate doctor.

    I watched part of a video where she is applying a mud mask to her face and recommending it as a "detoxification" method. According to her, "the clay sucks the fat-soluble toxins out through the skin."

    I dunno. Maybe there's some good science here that I know nothing about. It's just that it sounds a bit far out to me.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  3. #53
    Distinguished Community Member SalpalSally's Avatar
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    Quote Originally Posted by agate View Post
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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.
    That is the total of all peeps who have ever tried TY, but not all are still on it. I'd just like to know how many are still on it, for a truer picture.

    Thanks.
    Love, Sally


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







  4. #54
    Distinguished Community Member agate's Avatar
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    I asked for that information too but they don't have it.

    Well, someone must have it but we're not able to find out.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  5. #55
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    Default PML cases

    The MSRC site in the UK is reporting 212 cases of PML with 46 deaths as of March 1, 2012.

    http://www.msrc.co.uk

    BTW: The site has a lot of information as well as a magazine "New Pathways". You can scroll down the homepage and access issues of the magazine all the way back to 2000 which was the first issue. I find the magazine to be the best one published. The information is most helpful as it includes a lot of nutritional articles and self help than our publications here in the US which are more drug oriented. There are articles on Dr. Terry Wahls as well who has MS and recovered a lot of lost abilities using diet and alternative therapies. The UK has a lot of therapy centers which have hyperbaric oxygen treatments available and I wish we had those available to us in the US with MS.

    Gabriella
    Last edited by Gabriella7; 03-18-2012 at 02:16 PM.
    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. #56
    Distinguished Community Member Cherie's Avatar
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    I was at the MS Dream Center today near where I live and the T question came up. Of the 20+ people there with MS, 9 had been on Tysabri for at least 6 months. 3 were still on it (1-5 years) and one is starting it next week (having been on all of the CRABS and Gilenya in the past 2 years). I suspect there are a lot out there who have been on and gone off, either because of a +JC virus blood test or adverse side effects. But it really seems to be a great drug for a lot of folks who've been on it long term.

  7. #57
    Distinguished Community Member agate's Avatar
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    The unofficial source is listing 20 new PML cases, with the total now at 232.

    Of the 20 new cases, 8 are known to be in the US. No information about the others is available.

    There have been 3 more deaths. Now there will have been 49 Tysabri-related deaths due to PML (a death rate of 21%).
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  8. #58
    Distinguished Community Member renee's Avatar
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    I started Rebif after a 3 month hiatus.
    Why mask symptoms of multiple curable health problems with Rebif,
    a drug that was going to duplicate the experience of same symptoms 3x week.

    As much as I recoil injecting rebif 3x/week, I know how it feels and don't experience
    additional anxiety of a greater potential health threat from tysabri.
    I wish all the Ty users well.

    I dig the idea of mud pack therapies. They must have been around longer than most
    of western medicine for a very long time. :>)

    Put me in a proper sweat lodge with tradional practitioners- not newage dilletantes.
    Last edited by renee; 04-24-2012 at 10:03 PM.

  9. #59
    Distinguished Community Member agate's Avatar
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    Biogen has confirmed the new data for Tysabri, mentioning that one of the 232 cases is someone with Crohn's disease.

    renee, maybe mudpacks or a sweat lodge would be the ticket. Go for whatever works!
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  10. #60
    Distinguished Community Member agate's Avatar
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    Biogen says that as of 5/3/12, there have been 242 confirmed cases of PML in patients on Tysabri. The number of deaths as of 5/3 is 52.

    As of 3/31/12, there were 99,600 people who are on or have been on Tysabri.

    They are now saying that anyone previously on one of the injectable MS drugs is regarded as having been "immunosuppressed" for the purposes of being considered for Tysabri. In the past they have been insisting that there is a difference between "immunosuppression" and "immunomodulation." Now they are acknowledging that that difference was just hair-splitting, apparently.

    For patients who test positive for the JC virus, the estimated risk of PML is 2 in 1,000 for 1-24 doses of Tysabri. The estimated risk rises to 11 in 1,000 for 24-48 doses of Tysabri, according to what the Biogen representative said by phone today.

    The informal source, chefarztfrau, lists a total of 250 PML cases.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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