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Thread: TOTAL PML CASES in MS PATIENTS ON TYSABRI

  1. #171
    Distinguished Community Member agate's Avatar
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    I'm not sure what drugs you've been seeing advertised. If they are monoclonal antibodies--drugs with names ending in -mab as stillstANNding mentioned--they might cause PML but other brain infections might be meant.

    "Drug-induced lupus"? I see that many MS drugs are on that list, though I don't recall reading anything about this adverse effect. It's a very adverse effect, I'd say.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  3. #172
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    Joan (Nuthatch), I don't see Copaxone (galatrimer acetate) on that list.

    ANN
    There comes a time when silence is betrayal.- MLK

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  5. #173
    Distinguished Community Member Howie's Avatar
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    Sadly. I think a CURE lies in some or all CPOs vaults. MS is such a money maker, who wants to cure it. You cure it, the money stops.
    Roswell was a gift.

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  7. #174
    Distinguished Community Member BBS1951's Avatar
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    I think that's a conspiracy touted by patients on all of those incurable diseases, such as Cancer etc.

    These are incredibly complex diseases which will take time to figure out.

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  9. #175
    Distinguished Community Member agate's Avatar
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    As of June 6. 2017, there have been 731 (728 with MS, 3 with Crohn's disease) confirmed PML cases worldwide.

    As of May 31, 2017, the overall PML incidence was 4.21 per 1000 patients 24% of the patients have died; 76% of the patients are alive with varying levels of disability.

    As of May 31, 2017, approximately 170,900 patients received natalizumab in the post-marketing setting worldwide.

    --Somewhat modified, from this source:
    https://chefarztfrau.de/?page_id=716

    Here is the previous post (earlier in this thread):

    Quote Originally Posted by agate View Post
    This quote is hidden because you are ignoring this member. Show Quote
    The Website that has been dependable about posting data on Tysabri-related PML cases doesn't show the figures as often, but as of 9/7/16, there have been a total of 685 Tysabri-related PML cases.

    The incidence as of 8/31/16 is 4.22 per 1,000. 23% have died, and 77% are "alive with varying levels of disability."

    As of 6/30/16, the number of patients who have received Tysabri was 156,500.

    http://chefarztfrau.de/?page_id=418&...#comment-63161
    Last edited by agate; 06-26-2017 at 06:48 PM.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  11. #176
    Distinguished Community Member BBS1951's Avatar
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    Geez. Am pretty sure I would be a statistic if I took those riskier meds.

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  13. #177
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    Editing an earier post of mine that said that drugs ending in -mab (monoclonal antibodies) can cause PML. That is true but it is not limited to those drugs.

    ANN
    There comes a time when silence is betrayal.- MLK

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  15. #178
    Distinguished Community Member agate's Avatar
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    There have been 749 confirmed PML cases worldwide as of 9/1/17. Of these, 746 have been patients with MS, and the other 3 have had Crohn's disease.

    As of 8/31/17 the overall PML incidence is 4.22 per 1,000 patients.

    According to follow-up data for at least 6 months after PML diagnosis, 76% of the patients were alive with varying levels of disability.

    As of 8/31/17, approximately 174,400 patients received natalizumab in the post-marketing setting worldwide.

    This information is from the chefarztfrau Website, which has been posting regular updates.

    Lancet Neurology (November 2017) contains an article by T. Derfuss and L. Kappos entitled "PML risk and natalizumab: The elephant in the room." For a summary of the article, see:

    http://www.thelancet.com/journals/laneur/article/PIIS1474-4422(17)30335-6/fulltext?
    elsca1=etoc


    The risk of PML while taking Tysabri was said to be 1 in 1,000 but that was a while ago. Now it's up to 4 in 1,000, and as the authors say:

    But the most important problem, the elephant in the room, is the increasing overall incidence of natalizumab-associated PML, from the initial estimates of one per 1000 people who are receiving natalizumab soon after the second approval of the drug to the current estimate of more than four per 1000. As of June 2017, 730 confirmed PML cases have been reported in association with natalizumab treatment. Why better knowledge of risk stratification factors did not lead to a decline in overall incidence remains obscure. With a more robust risk estimate and stratification algorithm and with more alternative treatment options to substitute for natalizumab in high-risk patients, we hope that neurologists will use more caution in giving natalizumab to patients at high risk, and a reduction of natalizumab-associated PML can be achieved.
    Actually, the more recent data as shown in the chefarztfrau figures above indicate that the risk is 4.22 per 1,000.


    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  17. #179
    Distinguished Community Member BBS1951's Avatar
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    Since@ 1 in 1,000 people get MS, 4 in 1,000 brings home the scariness of PML odds.

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