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Old Thu Aug 19, 2010, 04:14 PM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Hi Paula,

There are no real standards for Cyclosporine and AA patients. What are used as guidelines are the ranges for kidney transplant patients, which is a trough level between 50-400 ng/ml.

Not all doctors will monitor Cyclosporine levels regularly, as it is metabolized differently in people. I've found that doctors who do monitor levels tend to want the trough to be between 100-200 ng/ml.

A trough level is measured between 10-12 hours from that last time Cyclosporine was taken (or immediately *before* it is time for the next dose). The idea is that your measuring the lowest level in the patient's body. You should ask the doctor for your husband's latest trough level.

Cyclosporine takes a long time to build up in the body and a long time to leave (~3 months either way). That is why people who relapse generally do so after 3 months or so.

Dosage is given by the weight of the patient. My doctor states that anything more than 5 mg/kg/day is toxic without any additional benefit. However, initially with the ATG treatment, many protocols will start with a much higher dose. Maybe in the hope of building up the levels more quickly??? This dose is later reduced to the safer levels.

I would be surprised if your husband's doctor was starting the taper already. Maybe they are trying to minimize toxicity or kidney stress as seen by high trough levels or creatinine numbers?? Get these numbers from the doctor to track them yourself, along with the BUN.

I am currently taking 4 mg/kg/day but only have a trough level of 50. At one time, I was taking 3 times the dosage, which was just plain crazy in my opinion!

Lisa V., I am curious what your husband's trough levels are with his low dosage. It would be nice to be on a lower dosage some day!
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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