Penicillamine beginner

[jacooper]

My nephrologist and I have decided to try penicillamine. I thought I would be able to eliminate my alkalizing agent (Urocit-K) and would take penicillamine for a long, long time (if it worked, of course). However, my doc said I still need to alkalize, drink tons of water and I would only be on penicillamine for about six months. I would like to know how other people take (or have taken) penicillamine. Ideas/thoughts?

[Mojo]

The good news is that pencillimine does work, I have been on this drug for 42 years now with great success and my brother has been on it for roughly 35 years also with great success.

I have never taken (Urocit-K) and although I do try to drink a lot if I am honest I don't, but it still seems to work for me.

My brother is on a maintenance dose of 750mg each evening and I am on a maintenance dose of 1000mg which is split morning and evening.

I know that a lot of people are very wary of this drug but with proper supervision it has enabled my brother and myself to have a very good quality of life.

My brother has never made any stones whilst on this drug and I only made two very small stones which luckily I managed to pass, they then adjusted my dose of pencillimine accordingly and I have stayed stone free since then.

The only down side is that when we first started on the drug it did makes us ill, but that all subsided in time.

I wish you luck and hope that it works as well for you as it has for us.

Please let me know how you get on.

Kind Regards

Mojo

[rellison]

I took this drug for a while until I suffered an allergic reaction to it. This drug also has a lot of potentially dangerous side effects.

After I had to stop taking this drug I did some research on my own and found an old Journal of Urology article which indicated that high doses of the blood pressure drug captopril (50 mg 3 times per day) would give almost the same results without the potential side effects.

After having had numerous lithotripsies, I have a blood pressure problem, so the drug fit perfectly with my treatment regime. After 30 years of suffering, I am down to 1 or 2 stones per year. The problem with this treatment is that some people may suffer problems due to low blood pressure. I had my dosage increased gradually to afford some of the side effects.

Bob

[rellison]

It doesn't matter what drug you take you have to drink plenty of fluids (at least a gallon per day) and you must take an alkanalizing agent (such as potassium citrate - K-lyte)