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AA Aplastic anemia

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Old Fri Apr 20, 2012, 12:50 AM
dfantle dfantle is offline
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Location: bellevue, wa
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Cyclosporine Levels

Hello, I had horse ATG treatment 3 weeks ago for SAA & we’ve been trying to balance my cyclosporine levels for the past 2 weeks. My Dr. wants me to maintain a level of 200 in my blood counts, and although I know we may not hit it exactly, we want be as close as possible without going below 200.

I started off taking 700mg/day. My first level was a bit below the 200, so my Dr increased my prescription by 25mg/daily. Then the value was high, so we went back to the original 700mg/day. However, they’ve still been high so we’ve reduced several times in 25 mg increments between testing. They were still high yesterday so we now reduced another 50mg per day to 600mg, and will test again tomorrow. The level was at 370, before we reduced on Monday, and still at 370 yesterday. I definitely have not taken the cyclo for 12 to 12-1/2 hours before the blood draw, so the blood levels are accurate.

I'm not taking or eating anything which should cause the levels to stay high, that we've been able to determine.

Has anyone else experienced this without finding a reason? Fortunately liver and kidney levels are still OK. High blood pressure started a couple of weeks ago which I understand is typical on cyclosporine so I am started blood pressure meds which don’t interact with cyclosporine. Tongue is whitish, and other than hot hands a few x per day, a couple of neck heat “flashes” the past couple of days, a little painless head pressure 1-2 x a day, no other symptoms yet, fortunately.

Thank you
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Dena
Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great
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Old Sun May 6, 2012, 02:34 PM
amberb amberb is offline
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My Cyclo level fluctuated quite a bit. I found that it can correlate with how hydrated I was when I had the labs drawn. I also noticed if it had been a while since my last dose makes a difference too. They would tell me to skip my morning dose if I was having labs done that day. They would be lower if the labs were drawn later in the day rather than in the morning. They like to see the levels be between 200-400.
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Amber, age 24, diagnosed w/ SAA and treated w/ horse ATG 7/11, rabbit ATG 1/12, on cyclosporine. Started Desferal infusion for iron overload 7/12.
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Old Sat May 12, 2012, 12:44 PM
dfantle dfantle is offline
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Location: bellevue, wa
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Thank you Amber. Good to know about the hydration level.
On my cyclosporine testing days, I have my clinic schedule my lab at 12 -13 hours from my previous dose, and since this is in the morning, my hydration level is likely a bit low.

My cyclosporine dose is now at 525mg/ day and the blood levels at last check were 197. We'll see where they are again Monday.
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Dena
Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great
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