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EAP for Apitegromab
Has anyone been able to get into the Expanded Access Program (EAP) for Apitegromab? Or has anyone been in the clinical trials for it and seen improvements?
I tried to get into the EAP a couple months ago with my neurologist in Houston, but unfortunately it didn’t work out. I’m really hoping I can get on it as soon as it comes out in September. I’ve had a seemingly rare side effect from Spinraza, where my contractures have released quite a bit in my arms and some in my legs. This has caused me to be unable to pick up my left arm anymore on my own. For the past 5 years, I’ve now had to rely on my parents to help me eat. I’m hoping Apitegromab will help me gain back the strength I lost!
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5 Replies
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My hospital is currently trying to get the FDA to grant permission for them to start the EAP, but they have not received approval yet. How come it fell through for you? I am looking forward to trying it. Though my doctor is unsure of how much of a benefit I will receive because I am “older” and my muscles are more atrophied. It’s still worth trying to me!
I’m sorry to hear that happened with spinraza. Did your doctor give any explanation as to why?
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My neurologist said that because of how strict the regulatory process is, by the time they would get it approved, the medicine itself would already be out. I’m 25, so I have hope that this medicine will help improve my strength! As far as Spinraza, no one knows how my contractures released because Spinraza is not supposed to be able to that. All my doctors see it as a positive result but I don’t lol.
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That’s interesting. I have never heard of that happening before. I’m sorry you had to experience that.
I’m really curious as to how this new treatment will play out. My neurologist is unsure of how effective it will be for someone like me, whose disease has progressed far more than those who participated in the clinical trials. I’m still willing to give it a shot, though. Are you on Evrysdi since Spinraza didn’t work out?
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I’m actually still on Spinraza! Since it was just my contractures releasing and not something major, I stayed on it. I had looked into Evrysdi but decided not to. I’ve actually been in a clinical trial for a little over a year for the Thecaflex port. So my injections are now done in a port in my back and I’m able to stay in my wheelchair! I’m looking forward to the bigger dosage of Spinraza that’s supposed to be available by this October. I’ve made many improvements with Spinraza!
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My daughter was in the first phase of the trial! She was also doing Spinraza and then switched to Evrysdi. We didn’t notice any major differences with the trial medicine and eventually dropped out because she had such a hard time getting IVs put in. However, we did notice a huge increase in tiredness/fatigue when she quit. That timing did coincide with the onset of puberty so it’s possible the tiredness was because of that too. She’s interested in trying it again once it’s approved. I’m excited that it’ll be available soon and wish you all the best!
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