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Givlaari
Acute Hepatic Porphyria
RareDisease
patrick_dunn2026-04-18

I was recently diagnosed with Acute Hepatic Porphyria (AHP) and my doctor prescribed Givlaari. This is an injectable medicine to treat AHP. The side effects list is a bit scary, and I'm wondering if anyone has experience with this treatment. I'd love to hear about your journey, how it's worked for you, and any tips on managing side effects. Thanks!

1 min read
last active 1d ago
HOT

Comments (8)

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william_bailey4d ago

I've been on Givlaari for a while now, and while it's helped a lot with managing my symptoms, I've had to be really careful about monitoring my blood work. The pancreas issues can be really scary, so I make sure to stay in close contact with my doctor and get regular check-ups. It's been a bit of a struggle at times, but overall, it's been worth it to have some control over my AHP.

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peter_moore4d ago

I've heard the injection site reactions can be managed with some ice or a heating pad. Has anyone tried that?

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william_owens4d ago

Hope it works for you! Keep us updated!

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ralph_andrews4d ago

Glad to hear it's working for you! I've had AHP for years, and it's great to see new treatments like Givlaari becoming available. I hope it continues to help!

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grace_wilson4d ago

This drug sounds terrifying but my best friend and doctor both assure me it's the best option.

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nathan_dunn4d ago

I have a friend with AHP, and she’s on Givlaari. She says the first few injections were tough, but now she’s used to it. She also mentioned that staying hydrated helped a lot with the side effects. Definitely worth a shot!

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janet_gardner4d ago

I just started Givlaari a few weeks ago, and I've had some really bad reactions at the injection site. It’s swollen and turns bright red. I’m not sure if it’s normal or if I should talk to my doctor about it. Any advice?

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peter_tucker4d ago

My doctor recommended keeping a food diary. I’ve noticed some foods make my symptoms worse.