What medicine has worked best for cystine stones?
Cystinuria medication: What medicine has... - Cystinuria Support
Cystinuria medication
Written by
English7
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16 Replies
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Tiopronin
Thank you!
Did you have any significant side effects?
Penicillamine
Thank you! Did you have any significant side effects?
No I started aged 14 and am now 67. There is another cystinuria Group on FB which has more postings than this site. Someone on there just started taking 125 mg penacillamine recently had 4 days of headaches now doing ok. Penacillamine doesn’t suit everyone.
Thank you so much for the info.
Penicillamine since 1985. No significant side effects either.
I personally found that none of the available medication helped me at all, was only fluids. Also I now don't eat meat. I have found that I pass a lot more small stones but don't tend to have to have surgeries as often.
Penicillamine worked wonders for me. I didn't experience any side effects either.
Penicillamine I have been on this since age 16 and fingers crossed no side effects.
I think that you should see what your specialist recommends and also take into consideration which drug is easily available in your area. Some CCGs might object to unlicensed drugs and they will make your life a misery just to get your prescriptions.
I recently went to work and did not mainly watch my health in mind to earn money soon found out that I have cystinuria. Also, on top of that, I caught a cold ear, and the infection went further; unfortunately, I even began to lose my hearing quietly. From cystinuria helped me penicillamine, there were no significant side effects, but hearing helped me hearing clinic near me ihear.com.au/clinics-locati... . They did a free hearing test and gave me a consultation. So do not delay your visit to the doctors because finding the disease in time gives a better chance for a full recovery.
