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  • Difficult Decision Looming

    Posted by deann-r on May 27, 2021 at 8:00 am

    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.

    tammy replied 2 years, 9 months ago 5 Members · 4 Replies
  • 4 Replies
  • dennis-turner

    May 27, 2021 at 8:38 am

    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.

    • alyssa-silva

      May 27, 2021 at 3:16 pm

      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.

  • lupa-f

    May 27, 2021 at 2:35 pm

    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.

  • tammy

    May 29, 2021 at 12:41 pm

    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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