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philip_knight2026-04-18

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.

1 min read
last active 4/18/2026
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Comments (4)

R
ralph_andrews4/13/2026

I've been living with HAE for years, and Orladeyo has been a lifesaver. I can finally live my life without constant fear of an attack. Seriously, it's a miracle drug.

C
carolyn_hughes4/13/2026

I'm actually scared to even try Orladeyo after hearing some of these stories. Has anyone had a completely uneventful experience with it?

J
jean_hudson4/13/2026

I've been on Orladeyo for about six months. My attacks have decreased significantly. I don't have any of the serious side effects, so I think it's worth it for me. Stomach pain and diarrhea can be managed with over-the-counter meds, and I feel so much more in control of my HAE.

J
joyce_ford4/13/2026

I'm in the same boat. Really struggling with the side effects. Has anyone spoken to their healthcare provider about switching to a different dose or medication?