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    • #26388
      Lupa F

      I’m going to my doctor in a couple weeks and will probably discuss Evrysdi. I’ve been on Spinraza for about 3 years and it still works pretty well, but I feel like the end of cycle slump is getting worse.

      I know some here have been on Evrysdi for a little while now and any thoughts on how it’s going (especially if you switched from Spinraza)?


    • #26389
      DeAnn R

      Hey Lupa, great question, I hope you get a lot of responses to help you decide what’s right for you. I switched from Spinraza to Evrysdi at the end of December. At this point I’m second guessing my decision. Unfortunately as I’ve written about I’m still struggling with loose bowel movements. I’ve found Imodium is helping but I don’t think it’s a long term solution. It’s really difficult finding a balance. As far as effectiveness I also feel Spinraza was better for me. I’m still glad I tried it, and am going to continue for a while to give it a proper chance.

    • #26390
      Kelly Miller

      They just released studies showing the expected results from Evrysdi aren’t going to come for 1-2 yrs. I didn’t take Spinraza, but I’ve been on Evrysdi for4 months now. My husband thinks my breathing has gotten better, stronger, and we’ll find out Thursday when I go for a pulmonary function test. I feel stronger in one of my feet and my trunk area, but that could be wishful thinking. I haven’t had any symptoms since about the 3rd week. That was stomach upset that ginger took care of.


      Good luck with your decision! I don’t think anyone else’s experience with either medication is applicable to you. We all have different bodies even tho we all have SMA. Our reactions are going to be different too. All you can do is get the info, which you are, and do what is best for you according to all the factors.

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