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    • #25232
      DeAnn R
      Keymaster

      A message just came through from my neurologists office regarding if I am interested in the new SMA treatment. They’d be happy to schedule an appointment to discuss my options. I’m still on the fence but am seriously entertaining the idea. If you’re on Evrysdi I’d love to hear how it’s going. If you switched from Spinraza do you feel you made the right choice? My two biggest concerns include the side effects especially upset stomach as well as if there will be out of pocket costs. I’ve heard there’s a special adapter for gtube users, so curious how that works too. The fact it’s only available through one specialty pharmacy concerns me a bit. Actually I have tons of questions and concerns but just hearing your experiences may help me decide.

    • #25249
      Yvette Haas
      Participant

      I took my first dose a little over an hour ago, and I’m still here, but that’s definitely not a helpful update for you.

      I can tell you that administering it is relatively easy, and the adaptor is simply because they give you Enfit syringes and you might not use Enfit extensions.

      I was never on Spinraza, so I have nothing to compare it to besides my normal progression. We’ll see what happens.

    • #25252
      Alyssa Silva
      Keymaster

      Congrats on starting Evrysdi Yvette! How exciting!

      DeAnn, I would entertain the idea to discuss options at the very least. Sometimes talking about it with someone can help organize your thoughts.

    • #25253
      Delara
      Participant

      Hello. Unfortunately, no medicine in our country has been approved by health institutions. Evrysdi has recently received FDA approval and we very much hope it will work better due to its cheaper price and less hassle. So far, Brazil, Japan and the United States have issued licenses, and the drug will likely be available in the next few months. The European Union is also considering the drug.

      Hairy movement milestones in pediatric patients, one year after treatment with Evrysdi(Residiplam)

      https://ibb.co/QCx5Cm1

    • #25260
      Pamela Muhammad
      Participant

      I am interested in wanting to know more about it,but unfortunately the M D A office isn’t answering calls nor my doctor.

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