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The best treatments for Cystinosis is 2 types of medications that slow the process of cysteine buildup. There is Cystagon and Procysbi. Cystagon was the first of its kind to treat the disease. It can have plenty of harsh side effects. Body and breath odor, gastrointestinal effects , headaches, fatigue, etc. Procysbi has been reported to have lesser effects.
Cystagon and Procysbi are available, but depending on where you live one or the other may not be available. Patients who show great compliance have better levels and their lives are better.