Tagged: evrysdi, SMA treatment, spinraza
- This topic has 11 replies, 6 voices, and was last updated 8 months, 4 weeks ago by
Tammy.
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September 9, 2021 at 2:00 pm #27961
DeAnn R
KeymasterI’m just wondering, where is everyone at in their treatment journey? Although I’m not entirely thrilled with Evrysdi I’m sticking with it for now. Imodium is managing my stomach issues for the most part. Despite feeling Spinraza works better the difference isn’t enough to justify switching back. At least not for me. For the moment.
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September 9, 2021 at 5:29 pm #27975
Dennis Turner
ParticipantSpinraza for me, treatment #8 I think, on Monday. I got that news this morning.
I don’t need gastrointestinal issues with Eversdi.
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September 9, 2021 at 6:07 pm #27972
Jeremy
ParticipantI started Evrysdi on June 15th (my first attempt at treatment). Can’t say I’ve noticed any clear effects so far, positive or negative.
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September 9, 2021 at 6:09 pm #27977
Alyssa Silva
KeymasterI’ve gotten 18 doses of Spinraza thus far. Going off of what Dennis basically said, the possible GI issues with Evrysdi are enough to make me want to stick with Spinraza.
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September 10, 2021 at 10:06 am #27981
Amy Olmscheid
ParticipantI started Evrysdi in January; similar to Jeremy, my first attempt at treatment. Haven’t noticed any significant gains or improvements. Not sure what things would be like without it…if declines would have spend up. It’s tough to know if it making any difference.
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September 12, 2021 at 1:14 pm #27983
Tammy
ParticipantSame as others. Been on Evrysdi since April and haven’t noticed any gains. Wish there was something
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September 13, 2021 at 8:41 pm #27998
Tammy
ParticipantDoes anyone know if their smn numbers(I can’t remember if it was smn1 or smn2) changed some time after starting either spinraza or Evrysdi? I thought I read a comment on here a while back that someone said that one of their numbers went up a number, but maybe I’m just totally remembering wrong LOL
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September 14, 2021 at 8:47 am #28001
Alyssa Silva
KeymasterMy SMN2 has stayed the same. I’m not sure if Spinraza or Evrysdi can increase those genes, but that’d be something worth exploring!
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September 14, 2021 at 9:05 am #28004
DeAnn R
KeymasterPretty certain these medications won’t affect the number of SMN copies as they’re not gene therapies like Zolgensma (which replaces the SMN1 gene.) They can however increase the amount of protein being produced. Maybe that’s what you’re thinking? Both Spinraza and Evrysdi target the faulty SMN2 gene to correct the glitch so they can produce more functional protein. As far as the number of copies I think we’re stuck with what we got at the moment. That’s my interpretation anyway.
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September 14, 2021 at 9:29 pm #28012
Tammy
ParticipantYeah maybe that’s what I had read. Like I said I can’t remember exactly and I can’t find where the comment was posted either. But maybe it was the protein. Which I don’t even know how it’s possible to check that. I mentioned something about that to my neuro and he looked at me like I had three heads LOL cool. I was like okay I guess I read incorrectly LOL
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October 3, 2021 at 12:16 pm #28145
Tammy
ParticipantOut of curiosity what are your smn2 numbers? Mine is 3
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