What was your Cyclosporine dosage?
 

When my son was released from the hospital, they started him on 350 mg of cyclosporine twice a day, now, a week later, he's down to 225mg twice a day. In my mind the less the better, it's indicative of how well his body's doing. Am I wrong in my thinking? Thanks for your input.

I would ask why they'd lowered the dosage, Edith.

I forget what the target formula is for mgs/lbs. of body weight, but it's just an estimate. The actual cyclo dosage often needs tinkering to get it right. It doesn't necessarily reflect how well the body's doing, just differences in individual metabolism, as well as the amount of side effects.

Ken was started out at 900 mg/day, but we've had to reduce it several times since then. He's currently on a maintenance dosage of just 150 mg/day, which is all he can tolerate without having creatinine and blood pressure issues (common side effects).

His doctor had initially been relying on creatinine rather than blood CsA to determine if he was tolerating it okay, and that wasn't a problem at first, but when we actually asked for a CsA test it came back way high (885, target level being 56-266), so it was quickly cut to 500/day, and then down from there as his kidneys started to struggle with it.

There are different protocols for ATG/cyclosporine.

I was on an older protocol with the cyclosporine dosage at 12 mg/kg(body weight)/day while taking ATG. This was lowered shortly after I left the hospital. The "older thinking" was to give the maximum cyclosporine that the body can tolerate.

Some of the newer protocols consider 5 mg/kg/day the maximum upper limit to take to avoid organ toxicity. The "newer thinking" is that more-is-not-better. Instead it is preferred to give the minimum cyclosporine dosage that is still effective.

You will find doctors in both camps. Unfortunately, there are no definitive guidelines for the drug in the treatment of AA/MDS.