Quote:
Originally Posted by edithr
Lisa, I see in your sig line that Ken is still on cyclosporine. By "still" - how long, exactly, has he been on it? And what dosage or dosage/weight? How often does he go for blood work? Does it put a stress on his kidneys? It seems to be stressing Eric's, he drinks at least 64 oz a day but the docs keep pushing for more, and now that it's hot out even more!
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This should explain most of it, Edith:
http://forums.marrowforums.org/showthread.php?t=1995
He has to drink lots of water too. It was hard for him at first, but he's gotten used to it, and carries a bottle of water with him wherever he goes. It's a nuisance, but water is cheap and readily available, and it sure beats the alternatives!
He was initially given 900 mgs/day following his first ATG, but that proved to be way too much (he weighs @ 160 lbs.). We've tinkered with it several times over the years, and he's now down to 150 mg/day. Possibly not a therapeutic dose, but that's all his kidneys and BP can tolerate. Maybe he doesn't really need it at this point, but based on our previous experience with relapse, we don't want to make any sudden moves. I've read that up to 30% of patients have to stay on cyclo indefinitely to maintain remission, so I'm guessing he's one of them. Not ideal, but you do what you have to do.