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Switching long-term DMT despite NEDA?

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    Switching long-term DMT despite NEDA?

    I have a new neuro (as my only one and long-time doctor retired last year) and he suggests that Ocrevus is a better treatment and I may want to switch from Avonex? I'm not sure what I'll do? If it's not broken, don't fix it; don't rock the boat, don't make waves; etc. Am I being "stubborn" or just too comfortable with "status quo" although I know MS is a progressive disease, etc.

    Background: MS dx 1994; started Avonex September 1997 (after lesion on thalamus caused vision disturbance). Follow up MRI showed substatial "silent progression" in the last three years (from age 25-28). Been on Avonex 21 years and I consider it my long-time companion. Despite being true needle weenie, I've "stuck with it" pun intended.

    Am I just being stubborn? Is it the complacency of comfort? My MRI's have been stable and I have had minimal progression. Sure 25 years after dx, my fatigue and cognitive issues nudged me onto SSDI in my mid-40's, but I know "how lucky" I am as my MRI shows lots of damage and black holes but "I look so good." Should I switch to a more aggressive tx now? Simply looking for feedback from my fellow MSers.

    Thanks, in advance, for your input!
    Life isn't about waiting for the storm to pass; it's learning to dance in the rain!

    #2
    Hello!

    Perhaps, your neuro has some of the following in mind and is nudging you in a direction for the best. I think the following article is relevant to you at this time. Best wishes!

    Explaining why you get worse despite being NEDA

    https://multiple-sclerosis-research....te-being-neda/

    Dr. Gavin Giovannoni … “In my MS clinic, I have to continually work on a narrative to explain to pwMS why they are getting worse despite having no evidence of disease activity. The following is a draft of a paper I am working on. Does it make sense? Is it too complicated? Does it need pictures? Thanks.”

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      #3
      Apologies, as not really sure I got the general status and timeline down, so forgive me if my question doesn't apply.

      After 25 years, is it possible your new neuro thinks you may be Secondary Progressive? If so, that could be why he is recommending Ocrevus.
      Kathy
      DX 01/06, currently on Tysabri

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        #4
        Thanks for your feedback!

        I enjoyed reading that article, too. There is so much information to gather. I know "how lucky I am" when I was dx Beta was dispensed in a lottery. Then, started Avonex 3 years after dx, which I continue today. My MRI's are stable (25 years later) but should I "upgrade" tx to newer stronger?

        Yes; I have wondered if I am SP now (dx mid twenties to early 50's now 21 years on Avonex). I still "look so good" and my MRI's have been stable. Avonex "hasn't failed" me. Ocrevus? Stronger=More Rewards=More Risks? Does everyone move to infusions? Another great article: https://multiplesclerosisnewstoday.c...ations&utm_cam

        Thanks for sharing your input (feel free to continue to chime in too) as I ponder my options.
        Life isn't about waiting for the storm to pass; it's learning to dance in the rain!

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