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ATG experience
Hi Bobbye
Just over a month ago I had ATG treatment for AA /MDS at Royal North Shore Hospital in Sydney Australia. I had anticipated that I would be put into a ward on my own, but in fact I shared a ward with three others. After being given a reaction test for ATG, the ATG transfusions commenced on the second day. There was little pain, and everything seemed to be going just fine for the first couple of hours, but then I started to get itchy all over and broke out in an incrediable rash. They interrupted the ATG transfusion and gave me medications to reduce my reaction. Two hours later they recommenced the ATG, but at a much slower rate. This seemed to work just fine. I had another 4 bags of ATG over the next four days at this slower rate, with each transfusion lasting about 8 hours. I was also on a high dose of cyclosporine (450mg) twice a day as well as prednisone (40mg) twice a day.
During my stay in hospital I had great difficulty sleeping and my blood sugar levels went very high on a couple of occasions. Fluid retension was also a problem. After six days I was released from hospital and have had weekly blood tests. My cyclosporine is now down to 150mg twice a day and I have been totally weaned off the predisone. Two weeks after getting out of hospital my platelets count went down to ten and it looked like I was about to get my first platelets transfusion. However they did another blood test and my platelets had increased to 18. Since then my platelets have increased each week. They are now up to fifty. Both red and white counts are both below the normal range and are much the same as when I went into hospital. The main side effects to the medications have been that my vision went a bit strange (seeing flashing lights) and I could not tell if the shower was hot or cold. At the moment, five weeks after I got out of hospital, the most disturbing thing is that I get bad cramps especially at night. I am taking magnesium tablets as my magnesium level is low, but this does not seem to be helping all that much with the cramps. I walk the dog each day but if I do much more than this I pay for it the next day. I have been very lucky in that I have not had any fevers, colds, flu etc. Hope this experience helps anyone who is about to undergo this treatment.
Cheers, David A
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