Switching from Spinraza to Risdiplam
Hi,
Apologies if this has been discussed.. new to forum. I have 2 children with SMA 3, age 13 and 11. They have been on Spinraza for 2 years. Considering switching to oral daily med (Risdeplam) but it's still so new. I worry about fertility issues and worry that it won't be as good as Spinraza. I'd hate to start then have to switch back and redo loading doses of Spinraza again. Has anyone here made the switch to oral? If so, what type are you? How is it going? Taste? Side effects? Did anyone switch back from oral and why?
Thank you.
These are all great questions. I am 44 and have not tried Risdiplam. However I have heard there is a taste to the medicine. There is a great Facebook group called "RISDIPLAM (Evrysdi) Information for Spinal Muscular Atrophy (SMA)" Search for that group and join. Those members will definitely be able to give you some 1st hand experiences. Obviously your children's Dr. is a great resource. Having SMA myself I want to encourage you to start including your children in on these decisions. I don't advocate for giving them final say at this age but their opinions should be weighed. It is their body and they will have to make these types of decisions throughout their lives. Start teaching them now. Best wishes! - Mike (SpinalMucularAtrophy.net Team Member)
