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Old Thu Aug 30, 2012, 09:35 PM
Lisa V Lisa V is offline
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Join Date: Aug 2006
Location: Waimanalo, Hawaii
Posts: 401
Amber, high creatinine readings while on Cyclosporine is really common. You can do a forum search using "creatinine" as a key word and pull up all kinds of threads. Ken's had to adjust his cyclo dosage several times for that reason. He has also gotten into the habit of drinking lots of water, which helps. It's a nuisance, but water is cheap and non-toxic, so having to carry a bottle with you and use the bathroom more often is a small price to pay.

A one time reading of 1.5 is not a huge deal, but if it stays at that level or higher, it's not a good thing. Our doctor said that at 1.4 you've lost about 25% of your kidney function. He wants to see it stay at 1.3 or below. I remember asking him how important it was to keep his CsA at the therapeutic level, and he said "It won't be important at all if you end up losing your kidneys." It's all relative, you have to weigh which is the greater danger.

If you've been on cyclo for over a year, you could probably stand to lower the dose a bit. I'd try the water first, but if that doesn't help, then I'd have a talk with the doctor about tinkering with your meds. How much are you currently taking? The same dosage that works for a while may become toxic over time. I don't have any experience with Desferal, but I understand that can make it worse too. You just have to keep monitoring it and figure out a way to balance the good and harmful effects of the medications.
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-Lisa, husband Ken age 60 dx SAA 7/04, dx hypo MDS 1/06 w/finding of trisomy 8; 2 ATGs, partial remission, still using cyclosporine
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