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Tysabri in old age

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    Tysabri in old age

    There is a rumor that after a certain age the Tysabri will not make a difference. This NP neurologist that I see(through telemedicine), said she doesn’t want to take the risk(for herself) of keeping me on Tysabri because I am likely secondary progressive.

    I was diagnosed secondary progressive 11 years ago when I was put on Tysabri. The infusions stopped the aggressive progression and helped me get stronger again. This has remained stable except when she tried to stretch out the infusions six weeks. I lost a lot of function then and demanded I get back to the 28 day schedule.

    The question is, what can I do to make sure my health care is my choice? Patients used to have rights.If she refuses to continue the Tysabri next time I see her what can I do?

    in a big city I would go to another neurologist but I live in a place where there is only one neurology clinic. Can a neurologist prescribe Tysabri over state lines?

    #2
    I have not heard that rumor. I would ask her to share her studies that support this with you. There are studies related to the length of time you are on it in conjunction with JCV titer numbers. Even then, the risk is yours. If you are high JCV and time on it elevated your PML risk, they will pull you off.

    Some people have been able to stay on, knowing full well the risk. But I think most neuros will not, as they can then be held liable should a patient develop PML - today's society is so litigious.

    Maybe you can ask if there is anything you can sign that indicates you understand the risk of PML and absolve them of any accountability, having it witnessed by someone saying you are of sound mind. Even then, some insurance companies are starting to deny Tysabri coverage based on high JCV titers.

    As for SPMS, if you truly are, Tysabri isn't really doing much. I didn't think Tysabri was approved for SPMS, so surprised insurance covers it if you had been given that diagnosis previously. There are some meds that are approved now, that possibly may help. Have you discussed why your neuro believes you are SPMS? Do you agree? If not, why?

    While not convenient, can you set up a one-time appointment in the nearest city to get a second opinion?

    Kathy
    DX 01/06, currently on Tysabri

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      #3
      Your idea of signing an agreement that I understand the risk is very good. I asked her if I could sign something and she said, no.

      As far as secondary progressive goes. I know they have used Tysabri for it.. My position is as it always has been that the risk of MS progression is 100%.

      I want to fight this disease with everything there is. I can still walk a little bit. It most likely, most surely, be a wheelchair by now.

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        #4
        Sorry to hear palmtree. There were theories before that after a certain age/disease duration, MS burns itself out. Then they said no, not the case. There are studies looking at this again, as the thought is that DMTs aren't needed or helpful at some point.

        Did you discuss any of the he DMTs approved for secondary progressive? It may help you hold off further progression.
        Kathy
        DX 01/06, currently on Tysabri

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          #5
          Switch From Tysabri to Moderate-efficacy DMTs Linked to Worse Disability
          Patients with multiple sclerosis (MS) switching from Tysabri (natalizumab) to moderate-efficacy disease-modifying therapies (DMTs) are at a higher risk of showing signs of MS activity and experiencing disability progression than those switching to high-efficacy DMTs, a real-world study found.

          Based on these findings, the researchers are arguing that, when possible, MS patients should be started on high-efficacy DMTs when switching from Tysabri.

          The study, “Effect of switching from natalizumab to moderate- vs high-efficacy DMT in clinical practice,” was published in the journal Neurology Clinical Practice.


          https://multiplesclerosisnewstoday.c...y-progression/


          Effect of switching from natalizumab to moderate- vs high-efficacy DMT in clinical practice https://cp.neurology.org/content/10/6/e53

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            #6
            Thank you for confirming what I already believe. I pray that the neurologist doesn’t force me to move to another place.

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