Thread: creatine levels
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Old Sat Jun 19, 2010, 04:23 AM
Lisa V Lisa V is offline
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Join Date: Aug 2006
Location: Waimanalo, Hawaii
Posts: 401
Rschem, I think your lab must write the numbers differently than ours. We see creatinine counts like 1.2, 1.3, 1.4 etc. Would your 186 be the same as our 1.8?

If so, it is cause for concern. Our hem/onc told us that anything over 1.2 is too high. He said that 1.4 is tolerable for a while, but it translates to roughly a loss of 25% of your normal kidney function. I can only imagine what 3.0/300 would mean! Not something you'd want to wait around and find out. Once your kidneys fail, that's it, you can't get them back (without a transplant).

Once or twice Ken's got up into the 1.6-1.8 range and the doc wanted to pull him off of cyclo altogether, but he managed to bring it back down by drinking LOTS of water, which has become a standard part of his daily regimen. It's a hassle, and it means a lot of bathroom visits, but water is cheap and non-toxic and it sure beats the alternatives. I'd recommend trying that first.

If that doesn't help, you may have to lower your cyclo dosage. Even a drop of 25 mg can make a big difference. 350 or even 300 mg/day seems a bit high to me. Ken's been on 175 mg/day for the last several years, and he weighs about 180 lbs. He may not be at the optimum therapeutic level, but since there doesn't really seem to be a consensus on what that level should be anyway, it's hard to know. It's apparently enough to keep him from relapsing and we've continued to see gradual improvements in his counts, so that's good enough for me.
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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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