KIDNEY DISEASE & DISORDERS COMMUNITY
Cystinuria: Thiola Question

Cystinuria: Thiola Question

I'm usually the one answering questions, but I've got one for you guys...

I have Cystinuria and have been on 900mg/day of Thiola for the last 6-8 months. My stone production has dramatically decreased, although the side-effects are pretty brutal (worth it as it keeps me out of the ER for the most part).

My question  si... should I still be metabolizing cystine? I strain my urine from time to time, and I find that I'm passing a substantial amount of sand-sized crystals (not quite big enough to be called 'stones'). I was under the impression that ZThiola STOPPED the metabolization of cystine, not just impeded the formation of larger bodies in the renal cavity (which it appears is happening). The Thiola stopping large stones from forming is great, but I was hoping to stop making cystine all together.

Is that too much to hope for?

LMNO
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