[Lisa V]

Sounds like the doctors are giving you the best case scenario in order to calm your worries, Edith. Hopefully they will be proven right, but each patient's case is slightly different from the next.

Everybody I've heard from has had chills and fever with the first infusion, so that is pretty standard. It generally clears up after a few hours and doesn't recur, unless you develop serum sickness (which I think would come later on?) I've heard of people getting hives before, and slowing down the rate of infusion should help that.

As for recovery time, it can vary. My husband sailed through the first ATG with no discomfort (apart from those first few hours), but the high dose of cyclosporine they had him on initially (calculated based on body weight) made him tired and hoarse and gave him hand tremors. He also had lots of unpleasant side effects to the prednisone, so he was not able to do much for several weeks until we tinkered with his meds a bit.

The second time, in comparison, was a fast recovery. By that time we knew what his optimum cyclo levels were, and since he'd had no serum sickness issues the first time, he was able to get by with much less prednisone. He was back at work the next day, so it is possible. It was the other meds rather than the ATG itself that made it difficult the first time.

As for the 80% chance you'll never see them again, that sounds a bit optimistic. My understanding is that ATG has a 70-80% rate of response, which doesn't necessarily mean full recovery of normal counts, just keeping them above transfusion level (aka partial remission). Add to that the chance of relapse, which off the top of my head I think is around 30%, and you have a slightly different picture. On the other hand, as medical knowledge and treatments improve, the odds improve too, and old statistics don't always reflect that.