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Old Wed Sep 28, 2016, 01:23 AM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Hi FrankW,

Everyone is different, but the first day of ATG is always the worst. They usually do a pre-test to determine your sensitivity to the drug and will adjust the flow rate of the ATG accordingly (or decide that it is too risky to do ATG at all!) They will also monitor you very carefully that first day/night. You will need lots of transfusions through the whole ordeal.

For me, the first night of ATG was like a really bad flu. I had the classic shake-and-bake: a fever of 105.6 and severe chills. It was scary, but then it was over. By the third day, I was up and walking around the hospital most of the day.

They give you a bunch of drugs to control nausea, serum sickness, etc. I always required tylenol before the ATG, as I would get a severe headache when it was administered.

Cyclosporine is hard if they start you out on a high dose. I felt wiped out. Once I was on a maintenance dose, it was not that bad. Just be sure to drink plenty of water, as it is hard on your kidneys. Again everyone is different.

Good luck with your treatment!
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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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