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Thread: Approximate risk of developing PML while on Tysabri (from Rocky Mountain MS Center)

  1. #1
    Distinguished Community Member agate's Avatar
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    Default Approximate risk of developing PML while on Tysabri (from Rocky Mountain MS Center)

    The Rocky Mountain MS Center InforMS newsletter for October 31 contains a chart showing the approximate risk of developing PML while on Tysabri.

    The chart doesn't seem to be readily transferable here, but this is what it amounts to:

    If you've been on Tysabri less than 24 months,

    ~your PML risk is 1 in 51,526 if you're JC virus negative.

    ~your PML risk is 1 in 18,171 if you're JC virus negative with prior chemotherapy.

    ~your PML risk is 1 in 1,288 if you're JC virus positive.

    ~your PML risk is 1 in 454 if you're JC virus positive with prior chemotherapy.

    And if you've been on Tysabri more than 24 months,

    ~your PML risk is 1 in 9,629 if you're JC virus negative.

    ~your PML risk is 1 in 3,396 if you're JC virus negative with prior chemotherapy.

    ~your PML risk is 1 in 241 if you're JC virus positive.

    ~your PML risk is 1 in 85 if you're JC virus positive with prior chemotherapy.

    A second chart is called COMPARED TO OTHER RISKS.

    ~Heart disease--annual deaths listed as 652,486, and the lifetime risk is 1 in 5.

    ~Cancer--annual deaths listed as 553,888, and the lifetime risk is 1 in 7.

    ~Stroke--annual deaths listed as 553,888, and the lifetime risk is 1 in 24.

    ~Hospital infection--annual deaths listed as 99,000, and the lifetime risk is 1 in 38.

    --------------------------

    The JC virus information is from the American Academy of Neurology, Fox and Rudick, Feburary 2012.

    The disease death information is from the Centers for Disease Control, 2003.

    ---
    This is just my take on this information: If your lifetime risk of dying of a hospital infection is 1 in 38 and the greatest risk of developing Tysabri is 1 in 85 (for persons who are JC virus positive with prior chemotherapy), you obviously are at a relatively very low risk of developing PML even if you're in the group that is at the greatest risk.
    Last edited by agate; 11-05-2012 at 09:52 PM.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

    "Always put off until tomorrow whatever you think you should do today." --Anonymous



  2. #2
    Distinguished Community Member agate's Avatar
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    If anyone remembers this discussion:

    http://www.braintalkcommunities.org/...highlight=risk

    it looks as if that survey has revealed that a lot of people don't understand risk very well.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

    "Always put off until tomorrow whatever you think you should do today." --Anonymous



  3. #3

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    This is really interesting. Off the top of my head, I would say I'd be far more risk tolerant of a cure with a risk of instant, painless death than of a treatment that may or may not slow disability but has a risk of torturous disability or death attached whether it actually helps or not, plus, has a risk of progressive, expedited disability simply by ending treatment as well. Does that mean my answer is not in the illogical group?

    It's the certainty of the treatment's effect that would raise the level of risk I'd be willing to take. I'd likely be more willing to take that risk the more disabled I was if the cure also erased all disabilities. Then again, if I participated in this questionnaire, who knows what my answers would reveal, if they would be consistent with that? But did they also take into consideration that we are aware of the risk of an increased relapse rate if we cease treatment of nat?

    Is your PML risk after 24 months a risk ratio you undertake EVERY infusion (so for every infusion, it's over 1% risk of contracting PML for the highest risk group)? Whereas the other general risks, i.e., stroke, heart attack, etc. are lifetime risks? And also risks you can reduce but not choose whether to participate in the risk-taking or not anyway (since we're all at risk)? It seems like the comparison is not accurate when one is a choice and the other is just risks associated with living. We already live with the general risks...perhaps that influences our risk-taking behavior when deciding adding risks from MS treatment choices too.

    It's too bad the questionnaire wasn't available for us all to try to test our risk tolerance. I'd be interested in how I fared on it.

    I wonder what others think their risk tolerance is between a cure/death or a treatment/PML...off the top of your head, would you be more risk tolerant of one versus the other?

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    Distinguished Community Member SalpalSally's Avatar
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    Yes Calcal..."Give me liberty or give me death"
    However, I wouldn't choose either, if I didn't have to choose.








    ..
    Last edited by SalpalSally; 11-08-2012 at 10:16 AM.
    Love, Sally


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







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    Distinguished Community Member agate's Avatar
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    calcal, I still have access to a summary of the questionnaire, as it turns out. I'm not sure you'd get the whole picture from it though because it doesn't always show the possible responses. You don't find out your "score." The designers of the survey presumably figured that up.

    Like all of the NARCOMS surveys, it was fairly long and contained many questions that are more typical of their surveys, like how your mobility has been in the past month. But sandwiched in there among the regular questions were some I've never seen in any other NARCOMS questionnaire, and I've been taking them since they started (except for the last couple of years).

    Examples:

    Have you gone to a casino and bet in the past year?

    Have you played the lottery in the past year?
    Imagine that we flip a fair coin 1,000 times. What is your best guess about how many times the coin would come up heads in 1,000 flips?
    In the BIG BUCKS LOTTERY, the chance of winning a $10 prize is 1%. What is your best guess about how many people would win a $10 prize if 1,000 people each buy a single ticket to BIG BUCKS LOTTERY?
    In ACME PUBLISHING SWEEPSTAKES, the chance of winning a car is 1 in 1,000. What percent of tickets to ACME PUBLISHING SWEEPSTAKES win a car?
    Questions like these were probably important in the Patient Decision-Making Survey.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

    "Always put off until tomorrow whatever you think you should do today." --Anonymous



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    Default Risk Taking

    If this were a cure for MS.....I might take the risk....BUT since it is not a cure I for one would not risk it simply because PML can be fatal!

    Blessings,
    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

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    I for one, do not understand these surveys and have pretty much opted out of them the last couple of years. I think it is because my answer might be one way
    on one day and another the next. I know this, but how do you put that on a survey if they do not ask the right questions?

    Yea, if Tysabri offered a cure, even with the risk, I would definitely take it at this point and take my chances, but since that is not the case I am much too
    afraid of becoming more disable from it than from the MS.
    Virginia

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    Distinguished Community Member agate's Avatar
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    Quote Originally Posted by Virginia View Post
    This quote is hidden because you are ignoring this member. Show Quote
    I for one, do not understand these surveys and have pretty much opted out of them the last couple of years. I think it is because my answer might be one way
    on one day and another the next. I know this, but how do you put that on a survey if they do not ask the right questions?
    I had cancelled my registration with NARCOMS partly for that reason too. I did reinstate it just now, mainly so I could look at that one survey about risk-taking again. I had my doubts about whether the drug companies were using the NARCOMS data as a way to promote their drugs. I still have my doubts but realize they have to do what they can to help their sales along. I as a patient/consumer don't have to take the drugs they're trying to sell.

    I agree about the questions. It's really hard to answer some of them because the way I feel varies. Maybe that's why they make a point of asking the same questions every 6 months, year after year, though--to get the general picture.

    Quote Originally Posted by Virginia View Post
    This quote is hidden because you are ignoring this member. Show Quote
    Yea, if Tysabri offered a cure, even with the risk, I would definitely take it at this point and take my chances, but since that is not the case I am much too
    afraid of becoming more disable from it than from the MS.
    I agree with you on that too. The PML cases due to Tysabri have tended to be less often fatal than other PML cases, but it's still a very nasty disease.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

    "Always put off until tomorrow whatever you think you should do today." --Anonymous



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