Discussions tagged “Cystinosis”

I've been taking Cystagon 50mg Capsules for a few months now to treat my cystinosis, and I've had a mix of experiences. While it's been helpful in managing the disease, I've also encountered some side effects that have been concerning. I've experienced diarrhea, changes in body odor, and a bit of fatigue. I've been trying to manage these with dietary changes and hydration, but I'm wondering if anyone else has had similar experiences and how they've dealt with them. I've also been worried about the more serious side effects like allergic reactions or fluid and electrolyte problems, but haven't experienced any of those yet. Does anyone have any insights or advice on how to navigate these potential risks? I'd really appreciate some community support and expert tips on managing this medication.