Have you made the switch from Spinraza to Evrysdi?

[mike-huddleston]

Hey Alyssa –

Always good to get info and keep your options open. I was in the first group of 5 adults in Maryland that started Spinraza back in mid-2018. I made the switch to Evrysdi last September, so about 6 years on Spinraza and a total of 22 injections, the first 13 of which were lumber and the last 9 were c-spine.

I have tolerated the switch to Evrysdi well and decided to do so after nearly a year of consideration and consultation with my neurologist at Hopkins, Dr. Charlotte Sumner. The reason for switching to the c-spine location was due to an ongoing weakness and drop in my RULM score in my right shoulder and upper arm (triceps area). As that did not slow or stabilize the upper arm and shoulder with the move to c-spine injections, we opted to switch to Evrysdi to hope for some kind of “jump start” as there is the possibility that I had plateaued on Spinraza. This is not definitive, but was the primary reason for switching. I will say that I preferred the c-spine injections over the lumbar location.

What I like about Evrysdi:

1. Daily in either the liquid or recently approved tablet form.

2. It’s systemic and since it doesn’t have to cross the brain blood barrier, seems to be distributed more quickly.

3. #2 is important to me as within about 1 1/2 to 2 hours after my daily dose, my muscles have a sensation of activation. I only had this once in my 22 Spinraza injections; the 3rd loading dose.

4. #3 is important to me as I do see some modest improvements in strength after taking the Evrysdi at least 2 hours before my rather intense home exercise program and in my twice weekly PT sessions (1 land/1 pool). This doesn’t last more than 8 – 10 hours or so.

Things I don’t like or aren’t important to me about Evrysdi:

1. Some initial stomach/GI discomfort, but I modified my schedule to take it with a more substantial meal and these issues went away.

2. The liquid form requires it to be taken with a meal. That said, the newly approved tablet specifically does NOT have this requirement.

3. The liquid, which I plan on staying on for now, requires refrigeration. The packaging it comes in is a rather large Styrofoam cooler with ice packs in it. The tablets will not need this.

4. The liquid comes in 2 bottles, each with 12 doses. So an odd refill schedule of every 24 days. The tablet is 30 doses, so again, removes this oddity.

5. Not an issue for me, but the newly approved tablet will NOT work with feeding tubes. The liquid version is fine with this. However, the tablet can be crushed and taken mixed in water, but that can’t be tap water as it interacts with the protective coating (not sure how that works once crushed anyway!).

I hope this provides some insight into one person’s experience, but please feel free to reach out if you have additional questions.

Mike

[alyssa-silva]

Hey Mike. Thank you so much for that well-thought-out response. I actually just met with my physical therapist today to discuss the possibility of switching. I, too, feel as though I’ve plateaued a bit. That said, Spinraza is still beneficial to me, which is why I hesitate to make the switch. I am also hesitant about the GI issues of Evrysdi. I have heard that the issues resolve themselves, though. I just have so many GI issues to begin with; it makes me nervous.

What is the consistency of the liquid? I have such a narrow feeding tube that I can’t put thick or sticky liquids through it. Also why can’t people with feeding tubes crush the tablet and put it in the tube? Lastly, how long did you need to take to transition from Spinraza to Evrysdi?

Sorry to throw all these questions at you, but I greatly appreciate it!

[mike-huddleston]

Hey Alyssa –

No worries and I’m always glad to help if/when I can. One of the nice things about being here is that we can share and learn from each other and from our experiences.

The GI issues were quickly resolved for me by just adjusting the meal I took it with. I initially tried it with lunch which is usually a very light meal for me. I switched to a bit heartier breakfast meal and that seemed to help.

As far as your questions:

– The consistency of the liquid form seems very thin, almost if not the same as water. Definitely not sticky.

– I’m not 100% positive, but I believe the issue with crushing the tablet up and using with a feeding tube has something to do with the protective coating on the tablets which affects absorption. IIRC, this is what the Genetech rep (like a BioGen FAM) told me. This may not be a concern as long as Genetech keeps producing both the liquid and tablet forms.

– For the transition, I think if you work out the timing correctly with your neuro, you can start Evrysdi about 90 days after your most recent Spinraza injection. My timing was a little messed up due to scheduling conflicts, so it was closer to 120 days, IOW, just about when I would have been due for my next Spinraza treatment. I did need a new PT assessment for the approval. I was able to take it the day I received my first shipment.

Hope this helps, but if not, ask away! 🙂

Have a good weekend.

[alyssa-silva]

Again, thank you for all this valuable information. It makes sense that the tablet cannot be administered through a feeding tube. Whenever I take tablets, I have to make sure they are uncoated before crushing. I am surprised, though, that Genentech didn’t take that into consideration. Maybe there was a reason for it. Either way, it is so amazing that these options are available to begin with!

[mike-huddleston]

Hey Alyssa –

Always glad to share my experiences with others. I did want to correct a couple of things I mentioned though as I was going from memory (uh oh) and did a little more reading to make sure what I said was accurate:

1. The protocol for taking either the liquid or tablet form of Evrysdi states that it is no longer required to be taken with a meal. I thought this was just the tablet, but that now also applies to the liquid form.

2. The tablet is never supposed to be crushed. I referenced it as it pertains to the feeding tube, which is correct, but for those who want to mix the tablet in water and take it orally, they cannot crush it either. They can do what is called ‘dispersement in water’, which means they put the tablet in water and let it kind of dissolve into more of a slushy consistency and drink it that way.

Apologies for any confusion, but I hope these clarifications help others who may have read this exchange.

[mike-huddleston]

And, absolutely YES, we are so very fortunate to have options. I was diagnosed officially at 16 and am 62 and lived with SMA for about 40 years without the benefit of treatment. It touches my heart knowing that SMA Type 1 is no longer the leading cause of death for children under the age of 2. And that is directly related to the 3 treatment options available. I am so appreciative every single day knowing that there are literally thousands of people working diligently to make our lives better.