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  • I’m finally at a point where I might be able to get treated so…

    Posted by survivinglife on February 28, 2024 at 5:18 pm

    Quick question: what are the pros and cons of evrysdi and spinraza and which one do you prefer?

    And does anyone know how much the first one cost? I can’t find it.

    mike-huddleston replied 1 month, 2 weeks ago 6 Members · 5 Replies
  • 5 Replies
  • deann-r

    February 29, 2024 at 11:24 am

    Good to hear from you again! How exciting to be looking at treatment options. It’s really a personal decision and depends a lot on the facility you go to as well. I’d certainly have a conversation with your doctor to see what they suggest. Personally the logistics of getting an injection every four months was why I switched from Spinraza to Evrysdi. Although I have some GI issues with Evrysdi it’s manageable. For me a daily medication is just easier.

    As far as cost, both are astronomical. What you pay really depends on your insurance and what programs you’re on. For me Evrysdi is covered 100%.

    Good luck! Keep us posted.

  • alyssa-silva

    February 29, 2024 at 2:17 pm

    That’s great news! Do you have a doctor who knows these two medications? They should be able to tell you the risks involved so there are no surprises for you. Like Deann said, these medications affect everyone differently, so it’s hard to answer your question. I’ve heard GI issues are a big side effect of Evrysdi, and because I have enough GI issues to begin with, I’m sticking to Spinraza.

  • dennis-turner

    February 29, 2024 at 3:24 pm

    For me, Spinraza just works. Cost is outrageous but fortunately covered by my insurance.

    As Alyssa has said, GI issues seem to be reported quite often with Eversdi and I already have concerns in that regard, so…

    The good news is both are reported to be effective in slowing loss of strength. Let us know what your decision is!

  • diana-a

    February 29, 2024 at 4:24 pm

    I’ve been on Spinraza since September 2017 and have been quite pleased. I personally prefer dealing with my treatment every 4 months instead of daily. Fortuntely it is a painless and quick treatment for me. I’m in and out in 15 minutes from the procedure. It’s costly and fortunately my insurance covers it. It seems that every four months rolls around pretty fast. Next week I’ll have dose #23. Can’t believe it! Looking forward to a higher dose someday in combination with another treatment.

  • mike-huddleston

    March 3, 2024 at 1:05 pm

    First of all, congratulations on getting close to be able to obtain treatment! That’s exciting. That we have a choice is also amazing!

    I’ve been treated with Spinraza since May of 2018 and mostly have had positive experiences and results. However, I do seem to have plateaued and have considered switching to Evrysdi. I have a PT assessment in early April and if I’ve declined as I suspect I have especially in the arms/shoulders, I have little to lose by switching and trying. Also of note, it is now much easier to switch between the two treatments than previously, so trying the alternative isn’t as horrible of an experience as it used to be.

    For Everysdi, the primary side effect I’ve heard about and echoing the comments of those here who use it, it’s the potential GI issues.

    For Spinraza, you do 4 loading doses in the first 8 weeks (0, 2, 4, and 8 weeks), then every 4 months for maintenance. Some folks have stated they feel much more energetic immediately after the injection, and more lethargic the last month or so before the next one. I have been moderately stable in the way I feel throughout the 4 month intervals. Another factor you might want to consider is the method, as Spinraza is administered with a lumbar puncture. That may cause pain or discomfort, and if it leaks, it may require a follow-up blood patch. This is rare. Also, for me, the lumbar puncture requires me to lay flat for nearly 2 hours after the injection to reduce the possibility of a headache. The one time I didn’t adhere to this, I had a headache for 6 days. YAMMV. The facility you have the injection done may use live fluoroscopy or may just rely in the anesthesiologist to guide the needle. You may want to know that going in if that’s a concern for you.

    And finally, since you asked, there is not a single thing that any doctor can point to and say definitively one will work better for you than the other. Some people respond better to Spinraza, some better to Evrysdi, and some who have switched have said they felt no noticeable difference. So, it’s going to boil down to your preference. That said, the ability of Evrysdi to distribute throughout your body as it’s oral and goes through the bloodstream is viewed by some as a better distribution mechanism. In autopsies, the only time when this can currently be determined, the highest concentration of Spinraza is near the injection site.

    From a cost perspective, it’s likely best top discuss with each company. Spinraza is typically considered a medical procedure and covered as such if you have insurance. Evrysdi is often considered a prescription drug, and thus often covered by your prescription coverage rather than medical. Also, BioGen seems to have a much better co-pay assistance program if Spinraza is not covered 100%. In discussions with Genetech reps, I don’t have a warm and fuzzy about whatever may not be covered for Evrysdi.

    Best wishes in your treatment journey. I took the time to write all of this because it’s not a simple answer.

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