March 5, 2021 at 5:58 pm #26203
Hey everyone –
I hope this finds you all doing well.
So, in January, I had my 12th overall injection. All of them have been in the lumbar area. Last week, I had my 6 month PT assessment and although overall the scores are fine and perhaps slightly increased, I had a drop in the right arm. I know there are “one of those days”, but I work out a lot as I’ve indicated in other threads here – about 2 hours a day on average and one land and one aqua PT appointment weekly – so I’ve noticed certain motions or overhead reaching has been slightly more challenging for months. Perhaps I just scored or did a motion high enough to earn the point on the Hammersmith or RULM last summer and was just under this time.
In talking with my neuro at Hopkins, they advised that analysis has shown a higher concentration of Spinraza around the injection site. I’ve been very fortunate and have seen positive muscle growth and/or strength in 4 different areas of my legs since starting treatment in 2018: anterior tib, VMO, quad, and hip flexor. But little to no gain, and even a slight decline in what has always been my stronger arm. Don’t get me wrong, I realize how fortunate I am, so I am not complaining.
All this leads to my question (I know, finally you’re thinking!!): has anyone discussed the option of a C-spine injection with their neuro? Is this even possible? I mean, if there is a higher concentration of Spinraza in the cells nearest the injection site and I’ve had such positive results in my legs, what are your thoughts on considering, say one out of every three maintenance doses in the C-spine rather than the lumbar region, just to see if there are similar upper body, arm, or shoulder improvements? Heck, I’ve even suggested, only half jokingly, that they hang me upside down for a couple of hours after the lumbar injection.
Apologies for the length? I welcome your thoughts, questions, and any feedback.
Stay well and stay safe.
- This topic was modified 1 month, 2 weeks ago by Mike Huddleston.
March 6, 2021 at 11:39 am #26205Lupa FParticipant
I think Kevin here has his injections done in his neck since the usual lumbar area wasn’t possible. But I don’t know that changing injection sites would do much. How did they show the Spinraza was concentrated at your injection site? I’ve never had any tests that would show something like that. But if it did affect different muscles depending on the site, if you switched locations, the gains in your legs might go away as you’d be skipping a dose there. Instead of doing that, the other option would be switching to Evrysdi which obviously isn’t localized at all in the spine since it’s taken orally.
There are also the trials going on now with higher doses of Spinraza. I want to try that myself (assuming they don’t jack up the price for it). The higher dose might mitigate any localization issues if they exist.
March 6, 2021 at 2:47 pm #26206
Thanks for your reply and thoughts, Lupa. I was not aware of that for Kevin, so hopefully he can chime in. Definitely understand there is a potential risk to gains by switching the injection site, but didn’t know what that would be if it was only one out of every three. Additionally, I do use a power chair full time, so since I’m not full load bearing even with the gains, I was thinking the risk of trying it once to see if there was any observable change may be worth it. And I do recognize that one dose there may not be enough.
The info regarding higher concentrations near injections site is, and I hate to say it, the result of autopsies performed on Spinraza dosing patients who have unfortunately passed away. That is the only “cell concentration testing” that I’m aware of.
Like you, I am interested in hearing the results of the DEVOTE higher Spinraza dosage study. I’m not sure if the participant criteria changed, but last I heard you had to be ambulatory to participate in it. But also interested to hear if there would be an increased cost factor. It just never made sense to me that a 40 pound child and a 200 pound adult would have the same dosing needs, but I admittedly do not understand a lot of that from a medical perspective.
And finally, I am also interested in Evrysdi due to it travelling via the bloodstream instead of CSF. But I have had positive results with Spinraza and there is a decidedly smaller group of Evrysdi patients and a much shorter experience period than with Spinraza. Still in awe that we even have a choice. 🙂
Again, I appreciate your thoughts and input. So much to consider.
- This reply was modified 1 month, 2 weeks ago by Mike Huddleston.
March 6, 2021 at 4:00 pm #26208DeAnn RKeymaster
Hey Mike, I do know some folks who get theirs via c-spine injections. Like Lupa mentioned Kevin does. I’ll see if he can chime in. As far as I know it hasn’t made much difference. I did get one injection up a level once but didn’t notice a significant difference. I know some do the Trendelenburg position with their head below their feet for an hour or so after the injection. I’ve always thought it was to prevent spinal headaches though. Interesting conversation.
March 7, 2021 at 1:57 pm #26209Kevin SchaeferKeymaster
I have always gotten mine through cervical injections. I’ve never had any side effects and I’ve definitely experienced benefits. I’ve written about it in my column. Here’s one from a while back. It’s an option worth at least discussing with your neuro.
Hope this helps!
March 7, 2021 at 5:06 pm #26210Alyssa SilvaKeymaster
Hey Mike. Out of curiosity, do you lay in the trendelenburg position after your injections? You’re supposed to lay down flat for an hour after the lumbar puncture, yes. But my surgeon always slightly puts me in trendelenburg to get Spinraza moving around in my spine. I’m not sure if there’s any validity to it or if it actually accomplishes anything, but he always says “we want to get that Spinraza moving all around.”
March 8, 2021 at 5:31 pm #26227
Thanks for the good comments and feedback everyone. Ultimately, I want to consider all options potentially available to me. This has helped tremendously. Will have the discussion with my neuro prior to my next injection in May.
DeAnn and Alyssa, I lay flat for about 2 hours after the procedure. Have joked about being hung upside down, but that’s probably because I could neither remember nor pronounce “Trendelenburg”. 🙂
A couple of good laughs in that linked article Kevin…thanks.
I’m pleased with how I’ve tolerated the injections, save for the first maintenance dose due to sitting up after about 40 minutes. The two hours is a reaction to that, along with the fact that I actually drive to and from each injection appointment. Ultimately, I’m anxious to hear the results of the DEVOTE study. although that may be some time off. But since Spinraza has been effective, albeit mostly concentrated to my legs (Yay!), I’d like to explore these type of steps before making such a (to me) huge decision to switch to Evrysdi. But admittedly, there is some appeal to distribution via the bloodstream and daily doses.
Stay well everyone and thanks again!
March 9, 2021 at 4:38 pm #26236Dennis TurnerParticipant
Like Deann, I have had my last two injections one vertebra up from where they wanted to place it. This is because I am in a trial that requires them to remove some CSF (I think 15 cc) and they were unable to draw it in the lower section. This is drawn prior to my injection and alway shows that I have outside cells in the CSF. My neuro laughs and says it is the Spinraza.
Mike, I have had more strength gain in my arms then in my legs. I am not doing the intensive PT that you are though.
My results with the Spinraza have been so good as to stabilizing my loss, that I haven’t given serious thought to Eversdy.
March 15, 2021 at 4:30 pm #26292
Hey Dennis – nice to hear from you! Hope you’re doing well. Thanks for the reply.
I’m contacting my neuro this week to at least start the conversation on having something like 1 out of every 3 injections in the c-spine area. My next one will be in May, then September. I also mentioned this to my BioGen FAM who mentioned a few other things. I am currently having treatment at an offsite Hopkins facility. If we pursue the c-spine, she’s almost positive this will be on the Hopkins campus, where they have live fluoroscopy available. This changes the way the drug is purchased and related administrative considerations. Maryland is a bit goofy, so this just means more hoops to hop through. Not sure how painful this would be switching to on vs. off campus. But will at least have the conversation. I love the results in my legs and am hopeful that alternating 1 out of 3 in the c-spine would provide comparable or at least better results/more stability in the shoulders and arms.
Stay safe and stay well all!
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