KIDNEY DISEASE & DISORDERS COMMUNITY
cystine

cystine

in my recent urine collection i got the following:

citric, acid, 24hr w/cr
creatinine, 24 hour urine        1.83
creatine, urine                      0.37
citric acd 24hr w/creat
citric acid, urine                238
citric acid, 24 hour urine   1166
citric acid, urine                636
uric, acid, 24hr w/o creat
uric acid, urine                  <10
uric acid, 24 hour urine       517
cystine, qn, 24 hour urine
date of birth                            06/27/1943
total volume                            6150 ml
cystine                            1307 where the reference range is 24-184 umol/ 24 h

                            to convert from umol/24hrs to mg/24hrs the following factor:
                            umol/24hrs x 0.24 = mg/24hrs

four months ago i had cystine 3569 and a year ago i had cystine 4239.

for the cystine i am taking daily 5 Pot citrate 10mg and 2 captopril 25mg


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If you can tolerate it, there are 2 other medications on the market that are good for Cystinuria (which it sounds like you have). I've got the same thing Brother, so I'm in your boat right along with you. Your numbers are right up the middle of a good case of Cystinuria, so welcome to the club!

THIOLA (tiopronin) and D-Penicillamine.

Both are very good, although the side effects are brutal. I'm taking Urocit-K (potassium citrate), Captopril, and Thiola and drinking a TON of water, and it seems to be keeping the stones at bay, for the time being. D-Penicillamine I just couldn't take, so I switched to Thiola and have slowly (over the course of 8 months) titrated up to 900mg/day. Started off with 1/4 of a 100mg pill, and ever so slowly increased my dose.

Unfortunately, the Thiola & D-Penicillamine simply slow down the process, and don't necessarily stop the Cystine from metabolizing, so no matter what medications you take, and no matter how much water you drink, you're on borrowed time before you next kidney-stone.

One thing... you seem to be very acidic. Has your Urologist mentioned anything about getting you more base? Sometimes even potassium citrate isn't enough, and bi-citra is necessary, or Polycitra-K. Ask your Urologist and see what he says...

LMNO
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