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This topic has 1 reply, 1 voice, and was last updated 3 months ago by Alyssa Silva.

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    • #24658
      DeAnn R
      Keymaster

      It’s hard to believe in September it’ll be my 3rd Spinnaversary.  That’s three years of getting a life sustaining medication injected into my spine every 4 months.  Needless to say it’s a roller-coaster of emotion.  On one hand I’m grateful to receive a medication that benefits me.  Honestly with my prior progression I don’t know if I’d be here without it.  It’s hard though to justify the cost with barely visible benefits.  Although I don’t pay for it out of pocket, I cringe when I add up the cost.  Let’s just say I’ve surpassed the million dollar mark a while ago.  Then there’s the injection process, and is it ever a process.

      My next injection is quickly approaching.  Because it’s such an ordeal, I don’t look forward to it.  The injection is scheduled, my labs are scheduled and the ride is booked.  Besides the ordinary lab work this time I get the pleasure of having my nose swabbed a couple days prior as a precautionary measure.  Not a big deal, however since I live so far away I hope I can get it done locally and have the negative results in time.  Then there’s the anxiety of finding my vein for the labs.  No easy task.  I don’t know how mosquitoes find my blood so easily.  Because of my “complicated” spine the injection is CT guided through my side with a 7″ needle.  Even though the injection itself doesn’t take long, with travel, labs, positioning and the required wait afterwards it’s a 10 hour process.  That’s on a good day.

      Over the next several months I’ll be weighing my options.  Can you believe it, we have options!  Now that Evrysdi is approved I’m seriously considering switching.  Despite the high expense of both treatments, much to my dismay, I’m grateful for the opportunity to see what the future holds whichever treatment I decide on.  Are you on Spinraza?  How long have you been on it?  Are you considering switching?

       

    • #24690
      Alyssa Silva
      Keymaster

      Hahah thank you for the good laugh with the mosquito reference. IT IS SO TRUE. My mom actually counted 8 mosquito bites on my shoulder alone last night. Those little monsters are ruthless and prey on those who can’t fight back!

      Congrats on your Spinnaversary. I’m coming up on four years which is so wild to me. I have decided to stay on Spinraza for now, but I’m so grateful that we have options. I really can’t believe it. Injection day is tiring for me as well, but I’m happy with the results Spinraza is giving me.

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