Horrible itch and welting with Thiola

[Kathyblue]

Well it's been about three months or so since my surgry (perc) and I was placed on a low dosage of Thiola (300mg per day).
I'm obviously new to this drug, and am having some concerns regarding it's side effects and overall effectiveness for me. If anyone could shed some light with their own experiences, I would greatly appreciate it!!!

First, for a period of about 2 or 3 weeks, i was horribly itchy all over, and whenever I scratched anything, it would welt up so bad it looked like i had been whipped. One morning I woke up with my back bleeding because i had been scratching in my sleep. Since then, this has pretty much gone away, although I'm still a bit itchy from time to time. Is this something that everyone goes through when adjusting to the medicine?? Ideas?

Also, i'm still passing stones. I didn't for about a month after surgury, but i'm starting to now more regularly. Does this mean it's not working for me, or could it be that the Thiola is keeping stones smaller and passable?

I'd love to hear from people on the drug about their experiences with it. I don't know if this is normal, or if i'm reacting badly to it or if it's not helping my level of stone formation. Any personal advice and info is much appreciated!
Thanks in advance, everyone. :)
~kathy

[CRYSTAL]

I don't remember being itchy like you are but it sounds like an allergic reaction to me. Be sure to tell your nephrologist about it right away. I took Thiola years ago and while no problems showed up in my blood tests I had an allergic reaction in the form of open sores (that looked like cancker sores do in the mouth) in the vaginal area where the urine passed through. I was too young to realize that this was caused by the meds so I went to my ob/gyn to have it treated thinking it was something else, all the while increasing the Thiola. When a family member that happens to be a nurse found out what problems I was having she related the 2 and advised me to stop taking the Thiola immediately. I did and within 48 hours the sores disapperaed. My doctor was furious that I hadn't told him about the sores and I insisted I would not take any more meds - ever. I've since changed doctors and am on Urocit-K to increase my PH and have no side effects that I know of. I know that there are other meds you can try. I would definately look into it. I research all meds online at www.nlm (National Library of Medicine) and whatever I can find on search engines like Google and Yahoo under "cystinuia" or "kidney stones". Good Luck! Let us know what you find out.

[Kathyblue]

Thanks Crystal. I'm in the process of getting ahold of my doctor right now to discuss it. (He's the best in the state, which naturally means he's also the hardest to get ahold of sometimes :rolleyes: )
Thanks for sharing your experiences and that website. I guess i've got more footwork to do!
I'd love to hear from anyone else that might have had experiences with Thiola.
thanks again,
~kathy

[SandraDee]

Hi Crystal,

I'm glad I read your posting. I've been on Thiola for 2 years and haven't had any side effects from it, that I know of. Now I'll have to pay attention and see if there's anything out of the norm. I do get itchy at night sometimes, hmmm. Have you had a hard time getting hold of Thiola? Every other time I go to refill, they're on backorder. Crazy stuff.

Anyway, I'm taking 600 mg a day. The only thing I can complain about is that when I'm off it and then start up again, I have some gastrointestinal issues for a few weeks then it passes.

Hope you find a solution to your allergy.

Best of luck, Sandra