SJSharksLvr

Hey there! I've been taking Cyclosporine for 8 years and was wondering if anyone else is taking it? I had severe kidney problems (never complete failure, but function at 20%)and at that time my main meds were imuran and prednisone with various other meds to combat the side effects. After using this therapy successfully for about 3 years, it stopped working for me. I gained 35 pounds of that "wonderful" water weight in 3 days. I am one big stretch mark, let me tell ya. Tried cytoxin, but couldn't complete the cycle because of a low white count. Went to Stanford where I became the ultimate human pin cushion (never thought I'd jump for joy at getting a central line!) and they thought I was going to have to have a transplant. At that time, giving cyclosporine to a non-transplant patient for nephritis was very experimental but they thought they'd try it as kind of a last resort before a transplant. Within 3 weeks, there was a huge change in my kidney function (from 24 grams of protein in the urine to 5)and I've been on it ever since. They've tried to wean me off the cyclo without success a few times. If anyone else out there is taking it, I'm curious as to how it has affected you and your lupus and if you've had any side effects from it and if you've been able to be weaned from it. I haven't yet come across any other SLE'ers who are taking this med without having a transplant. Me and my sister (who also take it for her kidneys) can't be the only ones! Thanks all!

Sharkie