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    • #29607
      Alyssa Silva
      Keymaster

      Hey all. I thought I’d start a thread to hear about everyone’s treatment updates so that we can learn more about everyone’s experiences thus far. Where are you in your treatment journey? Are you still hoping to get treatment? Have you been receiving treatment for a while? Switching treatments? I know a lot of people come to these forums to learn more about first-hand treatment experiences, so your input is so valuable. I’ll leave mine in the comments.

    • #29609
      Alyssa Silva
      Keymaster

      I have had 20 doses of Spinraza thus far. The past few doses haven’t felt as effective for some reason and I’ve heard that from other people in the community as well. That being said, Evrysdi is always in the back of my mind. I’ve recently had more trouble swallowing than normal, and I’ve been told Evrysdi helps with those muscles more. Although I’m not sure how factual that is. Curious to hear about your experiences.

    • #29621
      DeAnn R
      Keymaster

      I’ve been on Evrysdi for about a year and a half after switching from Spinraza.  Personally I felt better on Spinraza but the difference isn’t enough to warrant switching back.  I haven’t really noticed any significant gains in any areas.  No significant losses either, so that’s a win in my book.  My GI issues are being managed with Imodium.  That’s pretty much it.  No wow factor for me, but I’m grateful to have the opportunity to take the medication.

    • #29631
      Alyssa Silva
      Keymaster

      I know you said you haven’t noticed any significant gains but have you noticed a difference in swallowing? That’s good to hear you were able to fix your GI issues. That’s another reason holding me back from switching.

      • #29636
        DeAnn R
        Keymaster

        Again, I haven’t really noticed any significant changes. That bodes for swallowing as well. My neurologist suggested a swallow study to see, but I don’t feel like I would pass anyway so I’d rather not hassle with it.

    • #29638
      Diana A.
      Participant

      I’ll be receiving my 18th dose of Spinraza 7/1.  Spinraza has been effective for me.  I wish that they would increase the dose for adults.  Prior to every dose, I start feeling weak and need my “juice”.  Once every 4 months is easier for me and my schedule than dealing with my treatment daily.  Fortunately I don’t experience any side effects with Spinraza.  I’ve tried to sign up for the increased dose of Spinraza (Devote) clinical trial in Dallas but the spots were filled.  Hopefully they’ll have data from the clinical trial soon and the FDA will approve higher doses for adults.

      • #29639
        Alyssa Silva
        Keymaster

        I get the same feeling Diana. I call it the Spinraza slump. I’m going for my next dose a week from today and I barely have the energy to respond to you right now. Hopefully that larger dose comes sooner rather than later.

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