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Thread: TOTAL PML CASES in MS PATIENTS ON TYSABRI

  1. #21
    Distinguished Community Member agate's Avatar
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    Too late to edit the above post but I wanted to add that of the 181 cases (one of them with Crohn's disease), 67 have been in the US, 105 in the European economic area, and 9 in the rest of the world.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  2. #22
    Distinguished Community Member Cherie's Avatar
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    The annual meeting of the NMSS in our area was on November 17 and we had a doc (sponsored by Biogen) speak on "personalized medicine in MS". He was touting the new JC Virus antibody titer blood test that they have developed and are trying to get FDA approval for. Until that approval comes, he says Biogen will pay for any PWMS who wants it to have the titer done. He tells us that about 90% of Americans are positive for the JC Virus exposure. Becoming immunosuppressed can activate the virus (which is how people develop PML). He says once people convert from negative to positive, the recommendation is to stop Tysabri. He also admitted that many people on Tysabri have a positive titer and feel the risks are worth it to get the disease control that the drug provides for so many.

    Another line of discussion from him was related to the perception when this was first discovered that PML was always fatal. Now, he says, 80% recover partially or fully from the brain infection through plasma exchange.

  3. #23
    Distinguished Community Member agate's Avatar
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    Thanks for posting this, Cherie.

    I didn't realize that aging affects the presence of antibodies until I found this:

    Progressive multifocal leukoencephalopathy (PML) is a rare, progressive, and demyelinating disease of the CNS that may be fatal. It is caused by activation of JC virus, which usually remains latent and typically only causes PML in immunocompromised patients. The factors leading to activation of the latent infection are not fully understood. JC virus is widespread in the general population, including patients with multiple sclerosis, and the prevalence of antibodies increases with age.
    It's from a March 2011 statement on the MHRA Webpage. MHRA = Medicines and Healthcare Products Regulatory Agency and is in the UK.

    http://www.mhra.gov.uk/Safetyinforma...date/CON111508
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  4. #24
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    Does this mean that people over a certain age, just say 60 or 65 for starters, should not take Tysabri?
    Virginia

  5. #25
    Distinguished Community Member agate's Avatar
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    My personal, unprofessional feeling is that any older person should proceed with caution if thinking about taking Tysabri.

    But I've never heard anyone recommend that people over a certain age not take Tysabri. In fact, when I was 70 my neuro mentioned it as a distinct possibility.

    I was astounded since my impression was that Tysabri hadn't been tested on (a) people with SPMS, or on (b) people in my age group.

    I said, "Surely you're not recommending Tysabri for me?" and he backed off somewhat and said, "Well, we have to let patients know about whatever is available."
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  6. #26
    Distinguished Community Member agate's Avatar
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    There have been 12 new cases of PML, according to Biogen.

    As of September, 92,200 patients are taking or have taken Tysabri. As of December 1, there have been 192 cases of PML among MS patients on Tysabri. Of the patients with PML, 20% have died.
    Last edited by agate; 12-21-2011 at 02:34 PM.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  7. #27
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    Thanks Agate for posting this update. It seems the longer people are on it and I guess as more people take it PML seems to crop up more and more.

    Virginia
    Virginia

  8. #28
    Distinguished Community Member Cherie's Avatar
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    I appreciate the concise updates and break down of stats that you provide. Pretty low percentages considering how many people are on the med.

  9. #29
    Distinguished Community Member agate's Avatar
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    I've changed the post somewhat. The 92,200 figure for patients on Tysabri includes patients with Crohn's disease, and Biogen does not have a breakdown that would indicate how many of the 92,200 are people with MS and how many are people with Crohn's. Some might have both MS and Crohn's as well.

    Also, the 92,200 figure includes persons who have taken Tysabri but are no longer on it.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  10. #30
    Distinguished Community Member agate's Avatar
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    Nine new cases have turned up as of January 4 according to the informal Website and according to this MedPage Today article about the FDA approval of the test for the JC virus:

    http://www.medpagetoday.com/Neurolog...=breaking-news

    Of the 9 new cases, 6 are listed as in the US.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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