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  • Sedation for Spinraza Injections

    Posted by lindsay-russell on July 25, 2023 at 3:19 pm

    Hi! I was wondering if there was anyone on here who is taking Spinraza with sedation. If so, what medication do they give you?

    My injections have been moved to my back recently due to having a new interventional radiologist. Previously, I was having them in my neck. Now that they’re in my back, I am having excruciating pain due to the location of where they need to inject it. Even with the medication I take right now to make me sleepy, it has become unbearable. My upcoming injection in 3 weeks will be the first time with sedation and I’m a little nervous because it’s normally hard to find a vein in me for an IV.

    mike-huddleston replied 2 months ago 6 Members · 11 Replies
  • 11 Replies
  • deann-r

    Member
    July 28, 2023 at 10:11 am

    I’m sorry your injections are painful. When I was on Spinraza I didn’t have sedation, so unfortunately don’t have advice on that. As far as finding a vein I’ve found extra hydration and heat packs can help. Fingers crossed your next injection goes smoothly. Keep us posted!

  • alyssa-silva

    Member
    July 31, 2023 at 11:22 am

    Ugh I’m sorry to hear this Lindsay. Like DeAnn said, hydration and heat packs are great for needle sticks. Since getting my feeding tube last year, I’ve been so well-hydrated that I no longer have issues with blood draws/IVs. But they were a nightmare prior to this. I would also request an IV team if possible. They bring in a portable ultrasound machine and find the perfect vein before sticking you. I would look into this before your procedure if you’re interested though because I know at my interventional radiology, an IV team isn’t readily available.

    • Nate88

      Member
      August 4, 2023 at 11:33 pm

      Great advice!

    • lindsay-russell

      Member
      December 24, 2023 at 3:27 pm

      Even with an ultrasound machine, they have a hard time drawing my blood. For this past injection, I drank liquid iv every day for 2 weeks straight and it still didn’t help. Basically a finger stick is the only way my blood will flow easily lol.

  • dennis-turner

    Member
    August 1, 2023 at 2:43 pm

    I have been prescribed 10 MG diazepam. Lovely stuff.

    I take it just before they wheel me into the injection room and I am just so chill for the next 45 minutes or do.

    Praying Spinraza is helping keep you from deteriorating as quickly.

    • lindsay-russell

      Member
      December 24, 2023 at 3:30 pm

      I was using that medication in the beginning for a while but unfortunately it stopped working for me.

      Spinraza is definitely helping me so that’s why I’m still taking it even though it’s painful.

  • Nate88

    Member
    August 4, 2023 at 11:31 pm

    Hi! I get a hefty dose of Versed and pain medicine, and that mix has been working very well for my infusions. I’m totally asleep for the procedure. It’s so much better than feeling everything and worrying!

  • mike-huddleston

    Member
    August 12, 2023 at 12:31 pm

    Sorry you’re experiencing this level of pain with your injections, Lindsay. My injections site changed from my lumbar area to c-spine in September of 2021. The reasons were different, but I have not experienced pain in either location. And yes, I consider myself fortunate with this.

    That said, one of the current studies I believe that is still underway (it may be over, so maybe search clinicaltrial.gov or check with your neurologist) is the possibility of having a port surgically implanted. This is beneficial as it would eliminate the pain you’re experiencing, at least in theory. Another SMA patient I know was also experiencing such debilitating pain with her lumbar injections that she switched from Spinraza to Evrysdi. That could be another conversation with your neurologist if that’s something you’d want to consider.

    In the meantime, I hope your next injection – and the sedation – goes well.

    • alyssa-silva

      Member
      August 14, 2023 at 11:09 am

      A port would definitely be another great option too. Good thinking Mike!

      How are you, Lindsay? Did you go to your injection?

      • lindsay-russell

        Member
        December 24, 2023 at 11:22 am

        Sorry for the late response! I haven’t been on here since I last posted until now. I ended up having my injection in October (2 months late), and I did have sedation. The sedation worked great and I didn’t feel the injection like I had been! I ended up having to have my iv in my thumb which was not fun lol. My problem is no matter how much I drink, they can’t get a vein to work. I’m having a catch up dose in January with sedation so I’m hoping this one goes smoother some how.

      • mike-huddleston

        Member
        December 27, 2023 at 11:47 am

        Hey Lindsay –

        So glad to hear the sedation worked for you. That said, perhaps the radiologist is now comfortable with more than just lumbar injections so you might be able to revisit the injection site, cervical vs. lumbar. If you didn’t experience pain when having the injections in your neck and if the sedation becomes problematic (ineffective or giving it to you), I’d encourage you to discuss with your neurologist and the radiologist the possibility of relocating your injections back to your neck.

        Hope this works out for you!

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