SMA News Forums Forums Treatments and Research Evrysdi (risdiplam) Restlessness on Evrysdi

  • Restlessness on Evrysdi

    Posted by brianna-albers on April 9, 2021 at 7:00 am

    Has anyone experienced nighttime restlessness on Evrysdi? It’s not that I can’t sleep — I just can’t get settled and inevitably always trigger a pressure point. It started a few days after my first dose so I’m wondering if it’s related.

    amy-olmscheid replied 3 years ago 3 Members · 2 Replies
  • 2 Replies
  • kip-troendle

    Member
    April 9, 2021 at 9:41 am

    I recall some of what you are experiencing when I started Evrysdi.  I no longer have those feelings.  I believe each person’s body learns to accept Evrysdi.  For me, it was mainly my bowels.  Now (8 months later) my body has adjusted nicely and I rarely have problems.  I’m one who doesn’t like taking any forms of medication, so I sometime take a small amount of wine or other alcohol drink before bedtime, which helps me fall asleep easier.  Good luck and I hope it gets better for you!

  • amy-olmscheid

    Member
    April 10, 2021 at 2:06 pm

    Hi Briana,

    There were a few nights when I remember having a bit of that in my legs but it passed fairly quickly.  I am similar to Kip in that my side effects were mostly GI-related, It has been over 3 months and it has gotten somewhat better and I’ve tried to manage it with diet.  Hope you start adjusting!

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