Tiopronin for Cystinuria User Reviews
Brand names: Thiola, Venxxiva, Thiola EC
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- Drug class: miscellaneous genitourinary tract agents
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"I was diagnosed with cystinuria in 1984. I had just turned 18, that's when I found out I had the disease. I've had 22 surgeries to remove the stones, both of my sides were cut open to access the stones, plus tubes in my back, etc. My doctor in 2000 had no idea what it was until I brought in paperwork about the disease. My last surgery was in 1995, my stone filled a 2-gram bottle full of stones. One thing I will add: these stones cannot be blown up by ESWL. They put you in a tub of water and shoot sound waves through the water, that does not work for cystinuria! Back to Thiola: since I got Thiola in '96, I have not had any. It keeps the cysteine from clumping up and forming stones. For me, I'm also on sodium bicarbonate, potassium citrate, and a water pill. If it wasn't for Thiola, I'd still be making stones. As for side effects, I had none, the other medication they have I had side effects from. As for dosage, I take 6 x 2 a day, 100 mg. My doctor had a special test to see how much cysteine is still in my urine, I'm sure it's not much."