Today I’m doing my strength evaluation test with a PT and having my first discussion with a neurologist about Evrysdi. I’m not even close to making a decision yet. To me it’s mostly going to be a cost/benefit analysis. I passed on Spinraza because of the risks of drilling into my spine, but obviously that’s not an issue with risdiplam. What I really want to understand are the realistic potential benefits for someone my age (mid-late 40’s) compared with the side effects.
I saw people mention diarrhea on here as a side effect but it’s not clear to me if that is sustained over the course of using the drug or if it’s something that goes away over time. Sustained issues with diarrhea is a non-starter for me. I also was told male infertility is possible, although honestly that doesn’t concern me.
With regard to benefits, arresting the disease’s progression is important, but I’d also like to know if there are real gains in strength that are feasible.
Maybe the drug is too young for there to be enough data?