My son just started Amondys 45 for DMD: what to expect?

Sorry to hear about the challenges. I've had a few friends' kids go through similar treatments, and it's always a roller coaster. Just remember, you're not alone, and there are lots of support groups out there. I’m not sure how Amondys 45 compares to other drugs, but I guess it depends on the patient. We were lucky with insurance. My daughter's insurance covered most of it, but we had a big co-pay. The clinic had a payment plan which helped.

My daughter has been on Amondys 45 for a year, and we haven't had any major issues. A few minor cold symptoms, which she's had before, but nothing too concerning. It's been tough, but we're seeing some improvements in her muscle strength.

This is my third time hearing about this medicine. I remember when it was approved, I read up on it, and back then it did not have any severe consequences. I'm glad to hear it's working out for some people.

You know what's weird? I was totally prepared for the worst side effects, but the rashes were the worst, actually. I had some weird red spots and I was at a party! My son was embarrassed, so I say wear a long sleeved shirt. Also, we got some cream from the clinic for the rashes, which helped. It was like a party trick as I told people how the rash wasn't a hot sauce reaction. The cream was cool. Any side effects are temporary, but the results are permanent.

I wish I could give you better news, but my son experienced some pretty severe side effects. He had a bad reaction after the second injection—swelling in the face and throat, trouble breathing. Scared the life out of us. He's okay now, but we had to switch to another treatment. We're in a clinical trial now. This was back in February. I hope your son doesn't have any of these issues. The nurse that administered the injection was great but the clinic had long wait times and we did not like that.

My son was diagnosed with DMD and after doing some research he started Amondys 45. The treatment has been going well, and he hasn't experienced any severe side effects. We are keeping a close eye on him, but overall, Amondys 45 is working well for him.

I've heard horror stories about these treatments, but I've also heard good things. Maybe share updates here as you go along. It might help someone else.