medication

[felix]

I was given my dianosis of cysinuria only last week, the Dr i saw at the hospital mentioned that he was thinking that I should be placed on the medication penacillamine but before that he needs to talk to someone else as I am only the 2nd person he has ever made a diagnosis with.
I ahve been looking at site and have already started on a low animal protein diet and I guess what I would like to know is what exactlly this medication can or cannot do for me and also if there is anyone in the uk that I can get more advice on I would be very grateful

thank for this site I aint sure what I would have done had not found it there is so little information out there I feel totally lost


I understand and acknowledge that any response to this posting is provided for educational and informational purposes only, and is not intended to be a substitute for a health care provider's consultation. Furthermore, I understand and acknowledge that reliance on any information provided by the responding authors is solely at my own risk, and acknowledge that none of the individual contributors and responding authors can take any responsibility for the results or consequences of any attempt to use or adopt any of the information presented in response to my posting.

[rhiant]

My son was prescribed penicillamine and at that time he was too young (10yrs)to swallow tablets ( they shouldn't be cut in half) so Boots the Chemist got it in liquid form. Smelt awful and we had to disguise it in orange juice.
He had regular bllod and urine tests. It worked well for about 18 months and then had to stop due to protienuria.
He drinks loads and takes potassium citrate.
He's now on tiopronin.

best of luck

[felix]

I understand and acknowledge that any response to this posting is provided for educational and informational purposes only, and is not intended to be a substitute for a health care provider's consultation. Furthermore, I understand and acknowledge that reliance on any information provided by the responding authors is solely at my own risk, and acknowledge that none of the individual contributors and responding authors can take any responsibility for the results or consequences of any attempt to use or adopt any of the information presented in response to my posting.


Sorry I forgot to put this after my posting
Felix

[DAVIDGOLDFARB]

The thiol drugs might not be the first line agents. First increased fluid intake, changes in diet and potassium citrate. But if stones recur despite these measures, they would certainly be indicated. I believe they are better tolerated than one would guess.