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Multiple Sclerosis- Tysabri & antibodies

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  • 02-08-2011 10:13pm
    #1
    Julybreeze
    Registered Users Posts: 135 ✭✭


    Hi everyone,

    After reading through a few threads about Multiple Sclerosis, I've noticed that quite a few users are on Tysabri.

    My mother was diagnosed 12 years ago and was on Beta interferon, Avonex and Copaxone before Tysabri became available. She was the first patient in St.Vincent's to receive Tysabri due to the rapid progression of her MS and the frequency of her relapses.

    Now over five years on a recent blood test has shown that she has developed antibodies which means she has a 1 in 300 risk of developing PML (http://www.ninds.nih.gov/disorders/pml/pml.htm). Previous to this her risk was 1 in 1000. After lengthy discussions with her neurologist she has stopped taking Tysabri and went back to Copaxone.

    However after about 8 weeks on Copaxone she is in the middle of a relapse and will probably need a dose of IV steroids.

    She is hoping to be part of the trial of the new oral drug next month.

    What I want to know is has anyone else hasd to make this difficult decision and what medication are you on now instead?


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    #2
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,498 Mod ✭✭✭✭byhookorbycrook


    Am on Tysabri, just had the annual MRI and am awaiting results. For me right now the risk is about 1.7 in 1,000 but I really don't have an option. Last relapse did a lot of damage.

    I don't know anybody who has been on tysabri and then came off it but there's a good group on facebook that might be able to help you, will om details.


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