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    • #26853
      DeAnn R
      Keymaster

      June 2nd I have a telemed appointment with my neurologist.  Mainly we’ll be discussing if I’ll be continuing with Evrysdi or switching back to Spinraza.  Despite being less than thrilled with Evrysdi I don’t know if switching back is worth it.  Not only did I feel better on Spinraza I think physically I benefited more too.  It’s hard to determine though because with Spinraza there are ebbs and flows and with Evrysdi there’s more consistency.  Plus the differences are so subtle.  Although I still have stomach issues on Evrysdi I’ve found half a dose of Imodium after my meal and waiting 20 minutes before I take Evrysdi is making it tolerable.  Still I have the occasional “gotta go” moments that are unpredictable and inconvenient but they’re not as often.  If the process of getting Spinraza was easier I’d switch back in a heartbeat.  I’m probably an anomaly there as I’ve heard a lot of people really happy with Evrysdi.  I really dread making the wrong decision.  Has anyone else regretted the switch?  Anyone switch back?  I’d love to hear how the process went and if you’re happy with your decision.

    • #26939
      Dennis Turner
      Participant

      I just had the discussion with my Neurologist about switching to Eversdy. I told her that I was going to stay with Spinraza for “at least another year”, due to the reports I am hearing. She was surprised, but understood some of my concerns.

      Between the gastric distress and the potential uncovered cost, I can’t right now justify switching.  Besides, Spinraza just has worked for me.

      Let us know what you end up deciding.

      • #26947
        Alyssa Silva
        Keymaster

        These are my exact thoughts and feelings as well. If there ever comes a time when the lumbar punctures become too difficult to do, I will have to switch. But right now, I can’t see why I would rock the boat and take a chance. It took me a while to reach this decision, though. I was actually offered Evrysdi during a clinical trial a couple of years ago and turned it down. Making the decision was SO difficult for me. I think what you have to do is just envision yourself in both scenarios and go with that gut feeling. I don’t know if Evrysdi is better or worse for me. But either way, I don’t regret my decision.

    • #26946
      Lupa F
      Participant

      Would you have to redo the loading doses for Spinraza since you’ve been off it a while? That might make the decision for you.

    • #26968
      Tammy
      Participant

      I posted something in another thread about the issues people were reporting about diarrhea. Not sure if anyone saw. But figured I would post it in here too as it could be helpful to somebody else. Prior to starting Evrysdi I heard all the complaints about diarrhea, so I decided that I would try to do my best at preventing the diarrhea from the start. So since the very first day I started taking the med(April 30th) I eat a bowl of unsweetened steel cut oatmeal every day about an hour or so before taking my dose. And so far I have had no stomach problems, no diarrhea. I read that oatmeal can help stop diarrhea so that is why I decided to eat it everyday. It’s bland and it’s boring lol, but if it works then that’s the most important thing and I will continue to eat it. Give a try if you can

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