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HELP! C

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    HELP! C

    In the General Forum under the "Treat MS Like Cancer Thread" someone stated:

    So sad to see the recent reports about Tysabri's long-term risks that are just now being discovered.
    I have not seen any of these recent reports. I googled and came up with nothing. Do any of y'all know anything about this? Sorry I am in the dark...can someone point me in the right direction?

    Sometimes I think reading on this Board can be detrimental to one's health. Seriously...I am going to go chomp some Valium now.

    Thanks.
    Katie
    "Yep, I have MS, and it does have Me!"
    "My MS is a Journey for One."
    Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

    #2
    Also anxious for a response

    Hi Katie,

    Like you, also was wondering based on the other thread. The only long term risk I was aware of was related to PML, but that is in conjunction with JCV positive and titer number.

    Thanks for posting this. Will be following.
    Kathy
    DX 01/06, currently on Tysabri

    Comment


      #3
      I'm not anxious, but I'd like to see the actual "reports" before coming to a conclusion. If there were actual, verified reports about new Tysabri findings, they'd be all over the news, like the recent mouse lymphatic news. Web searches wouldn't come up empty.

      One thing I've learned about social media and health-related matters is that there's a LOT of misinterpretation of scientific information. Frequently what's called a "report" is just someone writing in a blog or posting in a forum about something they read in another forum about something that somebody else said about what someone who might have read an article said about it that they may or may not have interpreted correctly. It's like a game of "gossip" or "telephone" where what comes out at the end doesn't bear any resemblance to the original message.

      People posting on social media will often take one thing out of context and run with it like they've found the Holy Grail, or they'll panic and post that the sky is falling, when neither one is true.

      If there were actual "reports," we'd know about them. There have, though, been a couple of recent articles in which the authors expressed opinions about Tysabri.

      In one, one author recalculated the risk of PML using the original algorithms used by Biogen in the STRATIFY trials and found the risk to be higher than Biogen's reported estimates. Those calculations need to be verified by other sources before people jump to conclusions about how "deadly" Tysabri is. A PML risk of 1:50 isn't really that different than 1:80 when the risk is already in that realm. It would be news if 1:1000 turned out to be 1:50. This, not so much.

      In another article, from a French journal, a group of unnamed authors, possibly using the recalculated figures about PML, took another look at the Tysabri adverse effects of all kinds and made the argument that Tysabri is too risky to use. From the abstract of that article, nothing new is revealed. They're the same objections, perhaps intensified, that people on Tysabri say they're aware of but choose to take the risks anyway. (With Lemtrada still being so new, without a track record outside of clinical trials, Tysabri is still the most effective MS DMD available that has years of information available.)

      Neither article is a verified medical report. No one should jump to any conclusions without reading actual, verified reports.

      Can anyone provide these rumored reports?

      Comment


        #4
        I totally agree with everything JReagan70 said. Right now we're almost in the world of "too much information" with too many blogs spouting opinions. There are also many out there (i.e. competitors) who realize Tysabri's effectiveness and will do anything to shoot it down so their own drugs do better (think Amazon ratings).

        I have my next appointment with my neurologist on July 23rd and will run it by her. However, she is SO up to date (especially for rural Montana), I'm sure she would have let me know if something was really amiss.

        Comment


          #5
          I guess my post should have said curios, not anxious. I thought the same, no true articles on actual science sites.

          And since the AAN meeting was April an nothing there, I think it is just a lit of people drawing conclusions on their own. Had my neuro appt 5/28, no mention.

          Also just had infusion last week, and their Ty rep was in earlier in the week. I asked if anything new, nurses said no.

          All the technical articles I have seen all say long term effects are not known, as not enough of a population and I would think, not enough time from approval. We all knew that going into taking Tysabri.

          Look forward to your update ru4cats.
          Kathy
          DX 01/06, currently on Tysabri

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