Discussions tagged “Rare Diseases”

I've been on Cystagon 150mg Capsules for a few years now to manage my nephropathic cystinosis. I've found it to be incredibly effective in slowing down the damage to my kidneys, but I'm curious to hear from others about their experiences with this medication. What side effects have you encountered, and how have you managed them? Have any of you had to deal with more serious side effects like fluid and electrolyte problems? I've had some mild issues with diarrhea and fatigue, but nothing too severe. Let's share our stories and support each other!

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?