Difficult Decision Looming
June 2nd I have a telemed appointment with my neurologist. Mainly we’ll be discussing if I’ll be continuing with Evrysdi or switching back to Spinraza. Despite being less than thrilled with Evrysdi I don’t know if switching back is worth it. Not only did I feel better on Spinraza I think physically I benefited more too. It’s hard to determine though because with Spinraza there are ebbs and flows and with Evrysdi there’s more consistency. Plus the differences are so subtle. Although I still have stomach issues on Evrysdi I’ve found half a dose of Imodium after my meal and waiting 20 minutes before I take Evrysdi is making it tolerable. Still I have the occasional “gotta go” moments that are unpredictable and inconvenient but they’re not as often. If the process of getting Spinraza was easier I’d switch back in a heartbeat. I’m probably an anomaly there as I’ve heard a lot of people really happy with Evrysdi. I really dread making the wrong decision. Has anyone else regretted the switch? Anyone switch back? I’d love to hear how the process went and if you’re happy with your decision.
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