THIOLA?

[lucy198016]

My doctor has asked me the consense to give me Thiola.
What to do this Thiola?
I know that this thiola give very collateral effect.

[CRYSTAL]

Lucy,

I was prescribed Thiola many years ago for my cystinuria and did not know much about it at the time. I ended up being allergic to it. And it didn't slow the growth of my kidney stones either. I would recommend that you research it as much as possible before you begin taking it. I know that my doctor had me getting regular blood work done while I was on it and nothing appeared abnormal in my bloodwork so he kept increasing the dosage. And I remember that it was very hard to get at the pharmacies in town. Not to mention very expensive too. There are other meds your doctor could prescribe. How severe is your cystinuria?

Just some things to think about. I didn't have a good experience with that particular medicine, but appearently it works well for others. Good luck!

Crystal

[Kathyblue]

Lucy,
I have recently gone on a low dosage of Thola, and am experiencing joint stiffness as well as hairloss. I also went through a 3 week period of intense allergic reaction... my skin would welt up if anything rubbed against it.
I don't think the medicine is for me, but I'm going to keep taking it until we do another 24hr. urine test, and see what effect, if any, it is having.
I hope that if you do go on it, you tolerate it better than i do!! Some people have no problems with it.
Best of luck!!
~kathy

[crossover]

Lucy: Thiola? Which one? Captopril, a blood pressure med, is a decent thiola, but has shown limited prevention abilities. I've been on it for about 4 years.

Suggest Potassium Citrate to your doctor. It's the next best 'newish' thing. I've been on Potasium Citrate for just over a year and it seems to have slowed the formation, not stopped it, but slowed it.

[crossover]

Oops, Thiola is tiopronin. No experience with it or d-penicillimine. But from what I've read a number of drugs fall into that category.

I'd still recommend trying potassium citrate before trying either tiopronin or d-penicillimine.

[Natasha]

I have been on Thiola for around a little over 2 years.

I know the medicine works differently on every person.
But I feel it has truly helped me.

I hope it works for you,too.

[SandraDee]

Hi there. I've been on Thiola for 2 years as well and in the beginning I experienced some intestinal distress but after a month I didn't notice anything. The pharmacy was bad about giving me the long side effect pamphlet but once they did, I noticed that 1 in 6 people get warts. I have them, very small, kind of comical really since I had no idea for years what the heck these tiny bumps on my hands were. Anyway, I used to pass so many stones each year now I don't pass any and the rate at which my stones grow is so much slower. Now if I only took the medication every day as prescribed, drank all the water they wanted me to and lowered my protein intake, I have no doubt that the effects would be even more dramatic.

If you try it, go all out. Take them as prescribed, drink all your water, eat just barely the RDA of protein and listen to your body for any changes. Its the only way to know.

Best of luck.

Sandra