Discussions tagged “Orladeyo”

I've been taking Orladeyo 110mg Capsules for a few months now to manage my HAE, and I'm curious to hear from others who have tried it. Does it live up to the hype? Are there any side effects that caught you off guard? I have to admit, the urgent side effects list is a bit daunting, especially the allergic reactions. I've been lucky so far, but I'm interested in everyone's experience. I'd love to see a discussion about how it's changed our daily lives and whether any of you have ideas for managing the frequent stomach pain. Have any of you had to switch to different treatments or medications because of Orladeyo? I'm also wondering how well it's been covered by insurance for those who have it - feel free to share any tips you have for managing the costs! I'd be especially interested in feedback from parents who have children with HAE and are trying to manage the condition for the first time. I'm here to learn and share what I know, so let's discuss!

I've been on Orladeyo 150mg Capsules for about six months now, and it's been a rollercoaster. Initially, I was thrilled to finally have a medication that could prevent my HAE attacks, but I've since encountered some serious concerns. Before I started, my doctor explained how Orladeyo blocks the cause of swelling attacks, but I didn't fully grasp the potential severity of the side effects. Since the beginning, I've experienced stomach pain and occasional diarrhea, but I'm worried about the possibility of severe allergic reactions. I'm not sure how to weigh the benefits against the risks. My doctor hasn't given me much information on long-term use. I'd love to hear from others who are taking this medication and how they're managing their experience. Also, if anyone has insights on how to report side effects or long-term experiences with Orladeyo, it would be really helpful. If it's worth it, I'd like to know why. Thanks in advance.