-
Changing treatments
Can anyone here give me advice or tell me how the process goes if you are on 1 medication and looking into trying a different one? I’m currently on Evrysdi and have noticed no difference in the way I felt before taking it. Definitely no gains either. I’m in the process of slowly getting the ball rolling to try spinraza. The only annoying part is that my current neurologist does not administer this medication so I would have to go to an entirely different neurologist and it’s not in the most convenient location. Or should I say… it’s in a very expensive location because I would have to pay $11 for the George Washington Bridge fee and another $20 to $30 for parking just for the appointments. But anyway that’s not even my concern at the moment. I was wondering how it works with insurance to switch between the two. Is it a hassle? Has anyone here gone from Evrysdi to spinraza? And if you didn’t like one versus the other have you gone from one to the other, and then back to the initial one again? I’m just trying to figure out how difficult it’s going to be and I also don’t want to take the risk of having long gaps in between treatment and have no medication to take whatsoever. Have no idea how this works I’m a total newbie at this stuff LOL any advice would be greatly appreciated
-
6 Replies
-
I’ve only switched from Spinraza to Evrysdi and it was a breeze. I’m thinking it’s more complicated switching to Spinraza because there’s more involved but I’m sure it can be done. You’ll have to keep us posted if you do switch.
-
Thanks! Hopefully somebody has done this
-
Hey Tammy – I’ve been on Spinraza since mid 2018 and have not switched. I would also imagine since Spinraza has been around longer, more folks would have started there and then moved to Evrysdi, but not sure about the switching back, etc. Sorry, I realize not very helpful, but may be why getting some info is challenging.
That said, I have health insurance through work which requires at least an annual authorization. It seems first steps would be to target a switch over time frame with the neurologist who will be handling the procedure and have them start the pre-authorization process. Get that date firmed up and then also coordinate the date for stopping Evrysdi as I don’t believe you would have approval for both medications at the same time. Although that may be a question to ask for any possible overlap. Since Evrysdi is daily, it seems you would need to take it up to near when you would begin Spinraza injections, but again, that would be a question for your neurologist – someone would have to know the logistics around that. For Spinraza, BioGen assigns a Family Access Manager, or FAM, who could potentially answer that question from a BioGen perspective. Not sure if Evrysdi has someone similarly assigned or available to ask these type of questions?
Here is a link for some “getting started” info for Spinraza. If you haven’t looked at that yet, it might be worth a review.
Starting SPINRAZA® (nusinersen)
Whatever you decide, I hope it works well for you!
-
Thank you for trying to help and for all the info! I did call the number on the spinraza website and spoke to someone but from what they told me, it seems like I can’t be connected with a family access member until the doctor writes the script for the medication. Which is disappointing and not very helpful. When I started looking into Evrysdi, I was able to speak with a case manager right away, even before the doctor wrote the script and she explained the whole process to me and what I would need and all kinds of helpful information. I was able to get all my ducks in a row before even seeing the doctor. Which he thanked me for and said was very helpful lol. Was hoping I would get the same kind of info from the spinraza team as well. But unfortunately not really. Just very basic information from a customer service representative. Still waiting to hear back from the new neuro as well to see if she will accept me as a new patient. Hopefully I will have some answers soon
-
-
Hey Tammy. Going off of what Mike said, I do know you have to stop Spibraza 60 days before switching to Evrysdi. So there may be a similar timeframe window for switching back to Spinraza. Just something to keep in mind.
-
Thanks! I will definitely keep that in mind. As I’m sure as you said, there will have to be a certain time frame where I stop one before starting the other
-
Log in to reply.