Sedation for Spinraza Injections

[deann-r]

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]

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]

Great advice!

[lindsay-russell]

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]

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]

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]

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]

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]

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

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

[lindsay-russell]

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]

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!