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Old Thu Jul 18, 2013, 11:20 AM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Hi curlygirl,

It sounds like that hospital is a little inexperienced in the administration of ATG. They need to do a skin test to determine whether a patient is severely allergic, as some patients can go into anaphylaxis shock! Depending on the degree of reaction to the skin test, they would know up front whether to slow down the infusion rate or not do it at all. It sounds like you will have to be on your toes when working with this doctor/hospital. You may also want to look for a second opinion in parallel at a different facility.

I am not a doctor, but from my calculations, your son is on a very high dose of cyclosporine right now. Some of the newer research says that patients should stay not exceed 5 mg/kg/day but some of the older ATG protocols would start patients out at a much higher dosage (like 12mg/kg/day).

I think your son is on the equivalent of 15 mg/kg/day. Here is how I got that number:

60 lbs = 27kg
There is 100 mg/ml in the liquid form of Neoral
4 ml = 400 mg equivalent
400 mg divided by 27kg = 14.8 mg/kg/day (your son's current dosage)

You definitely, want to discuss this with your son's doctor soon. It could be that they are using a different protocol and have plans to lower the dosage. It could be that I am not doing the liquid form conversion right. Or it could be, like happened in my case, that they are using an older protocol and forgot to lower the dosage. The sooner you can correct this, the quicker your son's kidneys will thank you.
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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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