[Lisa V]

Fly Guy, if you click on "search" at the top of the page, and then enter "ATG what to expect" (or even just "ATG") a number of old threads will come up that you can read. Easier than going through the whole site trying to find them.

Basically, people's experiences with it seem to range pretty widely. Some do have a rough time with serum sickness, but my husband was one of the lucky ones in that regard. He's had horse ATG twice, and no serum sickness either time. The only real discomfort he had from the serum was after the first infusion on the first day. He had chills and fever and general achy flu-like symptoms, but they passed after a couple of hours. They give Tylenol for that, Benadryl to minimize any allergic reaction, and Prednisone to help prevent serum sickness. For him the Prednisone caused a lot of unpleasant symptoms (irritability, rash, thrush in the mouth, bleeding gums, food tasting funny, etc.), but since he hadn't had any serum sickness the first time, they started him on a much lower dose the second time around, and it was much easier on him.

Same with the cyclosporine. He'd already found his comfortable maintenance dose, so they didn't have to start him on such a high dosage. It's really trial and error and learning from past experience, but because of that he was able to resume work immediately the second time, whereas he was too tired and uncomfortable from all of the meds to do much for several weeks the first time. Since you're already on cyclosporine, that aspect should be easier for you too.

The only other difficulty he had really stemmed from our hospital staff's inexperience, and could have been easily avoided. To be fair, ATG is not a common procedure, but anybody who is familiar with the process knows that chills and fever with the first infusion are standard. Unfortunately, for his second round they made the unexpected decision to start him in the middle of the night when neither I nor his regular doctor were around to tell them that. The attending physician mistook the serum reaction for infection and put him on heavy-duty antibiotics, triggering a nasty C. dificile infection, which was much more miserable than the ATG treatment itself. Once they figured that out and took care of it, he was fine. I'm only mentioning this to show how important it is to have staff who are experienced with ATG. If we ever have to do it again I'm going to make sure that everybody knows what to expect, so they don't jump the gun.

Yes, your port should make things a lot easier too, particularly since you're getting a double lumen. Ken had to endure a lot of needle sticks the first time, but by round 2 he had a subcutaneous port by his collarbone, and that freed his arms up quite a bit. Don't be surprised if you need to be transfused quite a bit during the process. For many people, ATG tends to "eat up" platelets, so you may even have to get them daily while you're there. It varies, everyone is different. Response time varies a lot too. Ken took about 10 weeks to become transfusion-independant the first time, but only 5 weeks the second time. The overall response for him has been slow and gradual. Even several years later we're still seeing gradual improvement, although he'll often plateau for a while.

It seems ironic that Rituxan seems to have been the trigger for your AA, when that has sometimes been tried as a treatment for it! I guess that's true for a number of drugs used in cancer treatment, though. Just goes to show how unpredictable people's response can be, but I hope this treatment goes smoothly for you!