Re: Kidney problems with Cyclosporine

From: Lisa
Date: 25 Oct 2004
Time: 22:15:47 -0400
Remote Name: 64.75.158.200

Comments

Thanks Daria. I guess we'll just have to keep tinkering with the dosage and make sure they're monitoring both the creat and CSA levels more closely. None of the literature that I've read goes into this in any detail. Our regular doctor had said that if the creat didn't come down, he was going to take him off the cyclo, period. This alarmed me because I had talked to someone from aamds on the phone earlier, and she had warned me against going off too suddenly, that his counts could drop back dramatically if it wasn't tapered. Fortunately this other doc took a more reasonable approach, but we only saw him because our guy is out of town. I don't think either of them has seen too many AA cases. We live in a state of just over 1 million population (Hawaii), so the odds on anybody here having treated many cases is pretty low. Does anyone know about the process of getting a second opinion without actually shutting down our lives and traveling across the country? That just isn't manageable for us right now, although if it comes down to it, we'll do whatever we have to do.