Viewing 6 reply threads
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    • #26441
      Brianna Albers
      Keymaster

      Good news — I was finally approved for Evrysdi! I wrote a column about it, which you can read here. I’ll keep y’all updated as I adjust to the treatment!

      For those of you who are receiving Evrysdi, what has your experience been like so far?

    • #26452
      Tracy Odell
      Participant

      Great news, Brianna! I hope it goes well!

    • #26453
      DeAnn R
      Keymaster

      Glad to hear it. Never underestimate the power of someone with SMA. It sure seems like insurance companies do. Thanks for sharing your journey. Keep us posted!

    • #26458
      Kelly Miller
      Participant

      You’ve fought a hard battle, and you deserve a few screams for a positive outcome. Congrats!!! Insurance company 0, warriors with SMA 3,000,000,561, and counting.

    • #26460
      Alyssa Silva
      Keymaster

      So so happy for you!

    • #26462
      Amy Olmscheid
      Participant

      Exciting news, Brianna! Thanks for sharing.

      In response to your question, I have been on Evrysdi since January.  Had some minor GI issues that I navigated mostly with shifting my diet a bit but overall it wasn’t too bad. I always take it after having eaten and haven’t had any nausea.  I haven’t noticed any huge shifts in function, but I keep reminding myself that this is the long game.  If I can arrest the decline/degeneration, than that is success with this treatment.

      A few tactical things I wasn’t totally prepared for.  The box it comes in is big and sort of heavy…there is a cooler and tons of cool packs in there. I understand why as it needs to be kept at a certain temp, but I wasn’t totally prepared for it all 🙂  Also, it took me a bit to get used to the dosing process down. It is my first time using a liquid medicine and having to tilt the bottle upside down to draw it and then right side up, removing the syringe and making sure it was still at the correct dosage took me a while to get the hang of.  Just a few things to share with those that may be assisting you in the process 🙂

      Good luck!

    • #26494
      Mark Pratt
      Participant

      I’ve been on Evrysdi for three months and have had no side effects.  My issue is that every bottle has been 1-2 cc short of the full twelve doses.  We measure the dose carefully, my wife is an RN so she know how to fill a syringe.  I contacted my PAC and was told to always take a full dose and don’t mix doses from two bottles even if they are the same lot.  So my insurance company is paying $12,000 per bottle and expecting 12 doses when I’ve only getting 11.  Not sure how long this will go on before they catch on.  The folks at Evrysdi said it’s been reported to the highest levels but still no change.  Anyone else having this problem?

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