Viewing 7 reply threads
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    • #27961
      DeAnn R
      Keymaster

      I’m just wondering, where is everyone at in their treatment journey? Although I’m not entirely thrilled with Evrysdi I’m sticking with it for now. Imodium is managing my stomach issues for the most part. Despite feeling Spinraza works better the difference isn’t enough to justify switching back. At least not for me. For the moment.

    • #27975
      Dennis Turner
      Participant

      Spinraza for me, treatment #8 I think, on Monday.  I got that news this morning.

      I don’t need gastrointestinal issues with Eversdi.

    • #27972
      Jeremy
      Participant

      I started Evrysdi on June 15th (my first attempt at treatment).  Can’t say I’ve noticed any clear effects so far, positive or negative.

    • #27977
      Alyssa Silva
      Keymaster

      I’ve gotten 18 doses of Spinraza thus far. Going off of what Dennis basically said, the possible GI issues with Evrysdi are enough to make me want to stick with Spinraza.

    • #27981
      Amy Olmscheid
      Participant

      I started Evrysdi in January; similar to Jeremy, my first attempt at treatment. Haven’t noticed any significant gains or improvements.  Not sure what things would be like without it…if declines would have spend up.  It’s tough to know if it making any difference.

    • #27983
      Tammy
      Participant

      Same as others. Been on Evrysdi since April and haven’t noticed any gains. Wish there was something

    • #27998
      Tammy
      Participant

      Does anyone know if their smn numbers(I can’t remember if it was smn1 or smn2) changed some time after starting either spinraza or Evrysdi? I thought I read a comment on here a while back that someone said that one of their numbers went up a number, but maybe I’m just totally remembering wrong LOL

      • #28001
        Alyssa Silva
        Keymaster

        My SMN2 has stayed the same. I’m not sure if Spinraza or Evrysdi can increase those genes, but that’d be something worth exploring!

        • #28013
          Tammy
          Participant

          I’m probably just remembering incorrectly lol

      • #28004
        DeAnn R
        Keymaster

        Pretty certain these medications won’t affect the number of SMN copies as they’re not gene therapies like Zolgensma (which replaces the SMN1 gene.) They can however increase the amount of protein being produced. Maybe that’s what you’re thinking? Both Spinraza and Evrysdi target the faulty SMN2 gene to correct the glitch so they can produce more functional protein. As far as the number of copies I think we’re stuck with what we got at the moment. That’s my interpretation anyway.

        • #28012
          Tammy
          Participant

          Yeah maybe that’s what I had read. Like I said I can’t remember exactly and I can’t find where the comment was posted either. But maybe it was the protein. Which I don’t even know how it’s possible to check that. I mentioned something about that to my neuro and he looked at me like I had three heads LOL cool. I was like okay I guess I read incorrectly LOL

    • #28145
      Tammy
      Participant

      Out of curiosity what are your smn2 numbers? Mine is 3

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