Ask us: Struggling with cystinuria

In our “Ask a kidney stone doctor” section, we field questions from stone formers or their family members. Today’s question is about struggling with cystinuria. See other questions and answers or ask your own question here.

October 12, 2011

Question from a cystine stone former:

“I have cystineuria and am struggling to control it I have tried most
things. I average one stone approximately 14mm smallest to the 3.5cm that
blocked my left kidney. I have put a stop to my treatment. As you seam to
know alot more that most was wondering if I keep refusing treatment, how
many long would you estimate I have left?”

Answer:

Cystinuria is a frustrating disease.  There are times when stones are silent
and do not form and other times when stones recur quite frequently.  The
good news is that it is extremely rare that cystine stone formers will
progress to require hemodialysis or renal transplantation.

We also have published data showing that cystinurics frequently form stones
on just one side.  This has been well established.  One may try to sleep
such that the stone side is more commonly on the “up” side rather than the
down side.

Bottom line:  you need to drink lots of water – 24-hours per day.  We
recommend having a few additional alarm clocks to awaken you in the middle
of the night to ensure that you void and re-hydrate.

About Dr. Marshall Stoller

Marshall Stoller, MD, is a Professor of Urology at University of California at San Francisco, in San Francisco, CA
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