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scott_sanders2026-04-17

I was recently diagnosed with N-acetylglutamate synthase (NAGS) deficiency and prescribed Carbaglu 200mg Tablets. I understand that this medication is crucial for helping my body remove ammonia, but I'm also a bit worried about the potential side effects. Has anyone else been on this medication and wants to share their experiences? I know the serious side effects are rare, but I'd like to be prepared. What have your experiences been like?

1 min read
last active 4/17/2026
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Comments (4)

M
mary_wright4/13/2026

I hope this doesn't sound alarming, but definitely keep an eye on electrolyte levels! I had cramps and muscle pain due to low potassium, but sorted it quickly.

A
ashley_alvarez4/13/2026

I had a bad reaction to Carbaglu and ended up in the hospital. It was terrifying, but thankfully, my doctors caught it early. Don't ignore any unusual symptoms. Better safe than sorry!

J
judy_berry4/13/2026

Stay positive! It's a tough road, but managing NAGS deficiency is definitely doable with the right care and support. It's helpful to be proactive about your health and keep open communication with your healthcare team.

C
christine_powell4/13/2026

I'm glad I found this thread. I'm newly diagnosed and starting Carbaglu soon. Thanks for sharing your experiences!