medication interaction

[ClairesMom]

My 19 year daughter was recently diagnosed with Cystinuria. She has been lucky enough to be passing sand and several small stones a week. The urologist has started her on Potassium Citrate (tabs) and Thiola (which we can't even get until next week). I was wondering if any of the medications (aside from anti-biotics) have any interactions with taking YAZ birth control. Any information would be helpful. Also wondering if folks should wear Medical ID bracelets so that when consumed with Pain - may direct medical personal . Your thoughts on this?

[DAVIDGOLDFARB]

looked it up, no interactions that I can see. It's true that ER docs sometimes do not believe the person who says "I have kidney stones, I need pain meds". I recommend saying it gently and subtly (based on my own experiences). I can imagine for some thick-headed physician having an alert bracelet would be useful and reassuring.

[ClairesMom]

Thank you Dr. Goldfarb for taking the time to answer my questions. I am very new and I must admit almost obsessed with learning everything I can. I try to educate myself so that I can educate my daughter and refer to this web so she understands she is not alone. Being on 18 she has not had enough experience in her life to ask the right questions. She is now taking Potassium Citrate and she is starting on Thiola on Tuesday, so you can understand my worries about interactions with other meds. I still struggle myself. What is the best estimate for protein intake? How much Potassium is too much. She currently urinates sand daily and is able to pass stones 3 to 4 at a time several times a week. We have only had to go to the ER twice. At such a young age I worry about over exposure to radiation with the use of CAT scans. Is MRI ever used? We live in Concord NH and I just don't know if I should be doing more. Her PCP is really on board with whatever we ask of him in terms of referrals. Her Urologist is part of a group and at first I was relieved that he was on board but during our last visit even my daughter thought he was lax in terms of interest in exploring more info, I shared your website with him and he had never seen it before...You would think if you know you'd be having a long term relationship with a patient for such a rare disorder that one might explore all avenues. Sorry, I just feel a little isolated and could go on and on. Thanks for you time and any input you have is so reasurring. Gayle

[DAVIDGOLDFARB]

Gayle, here's short answers to some questions:
What is the best estimate for protein intake? about 1 gram per kilogram body weight. So if she weighs 150 lbs, that's about 70 kg, and 70 gm of protein would be a "low protein diet".
How much Potassium is too much. If her kidney function is normal as I expect given the story, you probably don't have to worry about this.
Is MRI ever used? No, MRI does not do a good job for stones. Ultrasounds avoid the radiation and although not as good as CT is often very adequate.
We live in Concord NH: you could go to Boston. Urologists, bless them, are not all oriented to do prevention. Some are great and we know who they, they see lots of people with cystinuria. But you might consider seeing my friends/associates/fellow nephrologists Eric Taylor and Gary Curhan at the Brigham.

[ClairesMom]

Thanks so much for answer some crazy questions. My husband and I will speak with my daughter about going to Boston it's only 1.5 hours from here. Not bad if it's not urgent.
Respectfully
Gayle

[michal]

Hi
We are going threw the same
My daughter of 22 was hospitalized a few times with pains
And the Dr diagnose wad dehydration (thanks to living in a backward country were no doctor know better then himself)

It took a wile till they found out she had Cystinuria
By then she had to be operated, her left kidney was filed with stone
6 weeks later she had to have what was left crushed
I’m not shore how to say it in English

And they just bombarded her with CT's
Acutely what I’m trying to say is, not to relay on 1 Dr alone
Always seek another opinion

We took the best we found for the operation
But for the medication we took another doctor
And we go to a third for checkups

if u nead some one to talk to or for your daughter molly1263@gmail.com