My son is almost 23 and an SMA Type 1. He has not wanted to do the spinraza but we are interested in the at home drug but not sure if people his age have taken it and what the outcomes have been. Any info would be much appreciated!
I am so sorry to hear you went through this! My son also had spinal fusion when he was 3, another reason he was so hesitant to try the Spinraza. We will look into the oral stuff more, was just wondering if anyone else his age had taken it and what progression it may have made. Thank you so much!
Spinraza seems to be problematic for those people who have scoliosis and had spinal fusion. My brother and I both had the fusion. That procedure was barbaric for us. They were going through my left lower side and trying to find a way with a tiny scope into my spinal fluid to injection the Spinraza. I woke up in the middle of the procedure the first time and I was screaming from pain. Then I was told I had been screaming the entire time but don’t remember. And every time it was a different damn doctor doing it!!! We REGRET getting it because now we’re dealing with the problems from it. And my brother’s nerve damage may be permanent. They don’t know. They never know anything!!!
There’s no evidence that one is better than the other on us old people. lol
We just have to wait. 😊
I’m almost 44 and I started the RISDIPLAM on December 1, 2020. Spinraza caused me and my brother too much nerve and muscle pain.
I don't see why not, does he go to a clinic?
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