New treatment, diagnosed long time ago.

[Happyfeet48]

Hi, new to the group, very glad to have found it! I was diagnosed with Cystinuria when I was 18. Have other health issues just learned kidney function has deteriorated. Currently on Potassium Citrate. Are there any new treatment’s?

[MomofCyskid]

Hello there. My daughter was diagnosed as well. Went on potassium citrate but that wasn't enough to lower her cysteine levels. She's now on a combo of Thiola and potassium citrate and finally her numbers are stable. I'm in the states, so not sure if Thiola is only available here. There's only one pharmacy in the nation that administers it but it's been a God send. thiolaec.com/

Hope this helps!