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This topic has 5 replies, 5 voices, and was last updated 4 months, 3 weeks ago by Kelly Miller.

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    Posts
    • #25584
      DeAnn R
      Keymaster

      Today my first shipment of Evrysdi arrives. Although I’m excited, I’m a bit apprehensive. Switching from Spinraza brings up all kinds of questions. Like, will it work as good? Am I making the right decision? Can I switch back if it doesn’t work? Despite those questions the big draw for me is that minimal labs are required. None for me in fact. My neurologist prescribed it over a telemedicine appointment just before Thanksgiving and three weeks later here it is. Well, any minute now.

      Taking a daily medication bears more responsibility on my part. Since it’s a temperature and light sensitive med, there are particulars in handling it. It’s also something that from my understanding should be taken after a meal and around the same time each day. Even with those requirements I find it less stressful than coordinating Spinraza day.

      My main concern is side effects. I’ve heard others mention stomach upset. Since it seems I have a sensitive stomach as I age I’m hoping that won’t be an issue. Time will tell I guess.

      I’d love to hear how things are going for you! Have you made the switch? Starting for the first time? Sticking with Spinraza? No treatment? What factors into your decision?

    • #25593
      Alyssa Silva
      Keymaster

      That’s so great to hear, DeAnn! Please keep us posted on your journey.

    • #25594
      Dennis Turner
      Participant

      Do you end up with a copay?

      Please let us know how it all works out for you!

      • #25595
        DeAnn R
        Keymaster

        Dennis, no copay. I have Medicare as primary with Silverscript for part D. Medicaid is my secondary but looks like it went through through my Medicare drug plan.

    • #25597
      Losmi
      Participant

      great news DeAnn, fingers crossed that evrything goes well!! It is so nice that after this nightmarish year you will actually be able to start 2021 with new hope:)

    • #25598
      Kelly Miller
      Participant

      Congratulations DeAnn! Definitely let us know about it.

      I’m scheduled to get my first dose on Tuesday. This will be my only treatment b/c I opted not to go for Spinraza. I really didn’t want to deal with the injections since I have so many bones in my back from my spinal fusion. I was also extremely worried about the side-effects. I couldn’t get the idea of severe headaches out of my head, so to speak. Now, Evrysdi is a liquid that goes in my g-tube. Sounds like they understand SMA people.

      I was told yesterday I would have a $70 per shipment co-pay, but we applied for financial aid and got it for all of the co-pay. All I’m going to have to pay is a shipping fee every time of $5. Do you have that DeAnn?

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