Written by Tim Gode
I am 28, 5’ 8”, 170 pounds, married four years, baby due November 9, grew up in central Missouri, an engineer. Cystine level – about 600 mg/day. Current status – lots of stones in the right kidney. Most aren’t going anywhere. One large stone(1 1/2 cm x 2 1/2 cm) about 1/3 of the way down the right ureter. Stent in place, penicillamine dosage increased to 2000 mg/day, sodium bicarb, B-6, Polycitra and an antibiotic. The doctor’s plan is to try to dissolve it first and then try electrohydraulic lithotripsy. I am glad he’s not cut-happy.
I found out when I was 18 and (almost) passed my first stone (about 1 cm diameter). First doctor correctly identified the cystinuria. From what I have heard so far, I was lucky to get diagnosed correctly on the first try. My first urologist seemed to take a scientific interest in the cystinuria. He tested me almost weekly for several months to establish baseline data. I was put on penicillamine, sodium bicarb, and B-6.
When I left college to start my career, I changed to my current urologist. He told me right away that I probably knew more about this than he did. (What an honest doctor!) He encouraged me to experiment with different approaches to controlling the cystine levels.
I tried going off drugs and doing the diet thing but in February ‘92, two stones ended that experiment. I went back on the drugs and tried reducing the dosage to 250 mg/day. This worked for four years, until my current stone made its presence known. Looks like I’ll be going back to 500 mg/day (maybe more) when this stone is gone.
As of Nov. 27, an IVP showed NO STONES WHATSOEVER in either kidney. Here’s what did it.
My doctor put me on Polycitra and 2000 mg/day of Penicillamine after installing the stent. It took about 2 months but the drugs not only dissolved the 2 1/2 cm stone but it dissolved everything else too! I’m back to 500 mg/day of Penicillamine and 4 doses of Polycitra (1 tablespoon in about 8 ounces of water) and the vitamin B-6 of course.
Removing the stent was really painful but not having to go under the knife was worth it. We never had to go to the lithotripsy! I’d recommend this treatment to anybody who can tolerate the Penicillamine