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. 😊
Hi 👋🏼. I’m 33 years old and take Evrysdi the oral medication for SMA. It is approved for all ages and all stages of SMA. I have been on it for 3 months. I feel my side effects have been minimal but I also haven’t had any great improvements either. My doctor recommended being on it at least a year before making any decisions about it. The stories I have heard and read vary greatly from person to person just like SMA does. I chose this treatment option because of its convenience and was interested in slowing the progression of my disease. I was not open to Spinraza because of how it is administered.
He is seen by a pulmonologist, in fact he did today, lol. He was just wondering how it worked and what it was doing for older people with SMA. He had no desire to do Spinraza and from what we are hearing from others, glad he didn’t.
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