Back to feed
89
466 5
martha_fox2026-04-18

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!

1 min read
last active 4/18/2026
HOT

Comments (5)

K
kenneth_jordan4/13/2026

I started Orladeyo about 6 months ago and have noticed a significant reduction in the frequency and severity of my attacks. The side effects are manageable, and I've found that taking it with food helps with the stomach pain.

S
sean_wallace4/13/2026

I have a 14 year old daughter who just started Orladeyo. The first few weeks were a bit tough with the stomach pain and headaches, but we’re managing it with over-the-counter meds. The reduction in swelling attacks has been a huge relief. We just need to figure out the insurance coverage better.

L
lori_allen4/13/2026

I've been on Orladeyo for about 3 months now, and it's been a mixed bag. The attacks have reduced significantly, but I've been experiencing a lot of fatigue and headaches. It's a trade-off, but so far it’s doing what it’s supposed to.

S
scott_sanders4/13/2026

I've been on Orladeyo for about a year now, and it's been a game-changer for me. I used to have attacks every few weeks, but now I can go months without any issues. The stomach pain is a bit of a hassle, but it's worth it to avoid the swelling attacks.

C
cheryl_vazquez4/13/2026

I've only been on Orladeyo for a few weeks, but so far it's been great. I've had a few bouts of diarrhea, but nothing too bad. I’m just glad the swelling attacks have stopped.