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  • mardermj mardermj Mar 30, 2005 7:25 PM Flag

    Multiple Immunosuppresant factor cited

    -- about this medication now that a third, and let's say fourth or even fifth person presents PML or some such infection? Would you be hot to try it or want it reintroduced as fast as possible? Was it helping you?

    Do YOU think this medication is something you would take to try to improve your condition?

    What do YOU think?

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    • Only after 8 doses of Tysabri over 18 months time has caused PML? Thousands of patients have been on Tysabri monthly for over 24 months as monotherapy with no reported disease discovered so far. Cause and effect relationship between the Crohn's patient who had PML and Tysabri is far out of field.

    • I know people that had great results with only a few infusions of Tysabri.

      My neuro wouldn't recommend it for me because I was stable on an interferon, and technically, it was to be prescribed for those RRMS (relapsing remitting patients) who were not having success with the other treatments.

      But I liked the idea that there would be another therapy around, should the Betaseron quit working for me.

      Now that it's shown up in a Crohn's patient, a big problem exists for an MS patient.

      When PML was found in Avonex/Ty trial, no problem, just don't take Avonex. Steroids were implicated, too, but nobody knew for sure.

      Now that PML has show up in a Crohn's patient, if the PML problem is a combo thing, then that means it is steroids and Ty that might activate the PML.

      Most MS patients I know really depend on steroids in a pinch. I, personally, hate to take steroids, and will often wait out an exacerbation. But when you can't walk, and you know steroids will relieve the exacerbation and give you your legs back, in a much shorter amount of time than "waiting for the flare to remit on it's own", you use the steroids.

      I've never heard of a neuro who wouldn't prescribe steroids to an MS patient during an exacerbation.

      So the problem becomes, if Tysabri comes back, and you can't take it with steroids, will the neuros agree to prescribe something with those restrictions, and would I, as an MS patient be willing to take a drug that would deny me the use of steroids if my MS flared.

      Big problem...more complicated now by this new announcement because Avonex can't be implicated in the PML.

 
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