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Thread: MS Meds may have more effect than we think

  1. #1
    Distinguished Community Member SuzE-Q's Avatar
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    Nov 2006

    Default MS Meds may have more effect than we think

    I thought this was an interesting proposition, that MS meds may have greater effect, in larger groups, than clinical trial data indicates.

    The suggestion is that MS damage takes longer to play out, so the full beneficial effects may not be fully evident in the limited time of clinical trials. Think Ocrevus for PPMS.


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  3. #2
    Distinguished Community Member Lazarus's Avatar
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    Oct 2006
    western MA


    I have not read the abstract yet but I like the premise of your thinking....certain long lost abilities are improving after years on rituxan (Ocrevus). I have mentioned before that my ability to stand while picking crops low to the ground has improved. I often move around for minutes before I start crawling to work.

    Sometimes I walk to the field and do something and return without crawling at all. I do not want to exaggerate because the improvement is subtle but it is real. I walk to the greenhouses sometimes. I use my scooter 90% of the time but that is to make sure I can get back after working. All in all I do not know what is happening with my legs but something is better.

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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  5. #3
    Distinguished Community Member agate's Avatar
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    Oct 2006
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    Yesterday the Wheelchair Kamikaze posted this reply on the Website you linked to. The actual reply is much longer and deals with stem-cell treatments but this is the part I particularly noticed:

    I still find it somewhat distressing that the Ocrevus PPMS study was frontloaded with patients who were likely responders, including twice as many with enhancing lesions than would be found in the general PPMS population. Makes it appear that the study was playing with loaded dice.

    That said, if your therapeutic lag theory is correct, and PPMS patients could have been benefiting from DMT's all of these years (I noticed that the interferon study you posted was from 2011), then it is tragic and even scandalous that such treatments have been withheld from progressive patients who have been left to simply watch themselves wither away.
    It's something to think about, seems to me.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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