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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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4 Replies
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I just had the discussion with my Neurologist about switching to Eversdy. I told her that I was going to stay with Spinraza for “at least another year”, due to the reports I am hearing. She was surprised, but understood some of my concerns.
Between the gastric distress and the potential uncovered cost, I can’t right now justify switching. Besides, Spinraza just has worked for me.
Let us know what you end up deciding.
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These are my exact thoughts and feelings as well. If there ever comes a time when the lumbar punctures become too difficult to do, I will have to switch. But right now, I can’t see why I would rock the boat and take a chance. It took me a while to reach this decision, though. I was actually offered Evrysdi during a clinical trial a couple of years ago and turned it down. Making the decision was SO difficult for me. I think what you have to do is just envision yourself in both scenarios and go with that gut feeling. I don’t know if Evrysdi is better or worse for me. But either way, I don’t regret my decision.
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Would you have to redo the loading doses for Spinraza since you’ve been off it a while? That might make the decision for you.
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I posted something in another thread about the issues people were reporting about diarrhea. Not sure if anyone saw. But figured I would post it in here too as it could be helpful to somebody else. Prior to starting Evrysdi I heard all the complaints about diarrhea, so I decided that I would try to do my best at preventing the diarrhea from the start. So since the very first day I started taking the med(April 30th) I eat a bowl of unsweetened steel cut oatmeal every day about an hour or so before taking my dose. And so far I have had no stomach problems, no diarrhea. I read that oatmeal can help stop diarrhea so that is why I decided to eat it everyday. It’s bland and it’s boring lol, but if it works then that’s the most important thing and I will continue to eat it. Give a try if you can
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