Discussions tagged “cystinosis”

I was recently diagnosed with cystinosis, a rare genetic condition that's causing a buildup of cystine crystals in my cornea. My doctor prescribed Cystadrops 0.37% Ophthalmic Solution to help manage the symptoms. I'm hoping to connect with others who have used this medication. How has it worked for you? Any tips for managing the side effects or making the application process easier? Please share what you know!

Procysbi 300mg is a drug used to treat nephropathic cystinosis, a rare genetic condition where cystine builds up in various parts of the body, damaging organs like the kidneys and eyes. The medicine helps in removing excess cystine and can slow down or prevent organ damage. I've just started taking Procysbi, and I'm curious to know what others' experiences are with this medication. What side effects have you noticed? Are there ways to mitigate them? Any advice would be greatly appreciated!

Has anyone been on Procysbi 75mg for a while and can share their experiences? I've been on it for a few months now and have had some issues with side effects, especially the stomach problems. I've been trying to figure out if I'm doing something wrong or if this is just part of the process. Any tips on managing these side effects would be greatly appreciated!