What to expect?

[ellmp]

It's been 18 days since my 75y.o mom had aher ATG treatment. Her Cyclosporin levels were 1350, so they just took her off it to level things out. She is lethargic and can't even pick up het legs or move to a chair. She needs platelets every other day or else they drop below 8K and blood every day of hgb drops below 7.5. Her legs are swollen and her BP is high (around 178/80). It's day by day. She gets sores in her mouth and wants to give up. We need to getthrough this waiting period for the treatment to work. Please help.. What is normal and what else to expect? When does even minor improvements start ( on average) I have called the peer support network but have not received any return on my messages yet.

[Marlene]

I can't speak for this treatment but I would venture to say that getting the excess cyclo out of her system will help. That is strain on her kidneys which can cause the edema and high BP.

Marlene

[JEZ]

My doctor had me on prednisone for a while to handle the effects of the ATG, then started the cyclosporine... I started it a month later rather than 2 weeks because I got serum sickness from the ATG. The first type of Csa I took was not effectvie. I then went on brand name Neoral. I was very depressed and fearful that I would not respond to treatment and wondered if it was worth.... I feared I was dying. Four months after treatment my bone marrow was starting to work and I had my last transfusion. I felt pretty ill for about 6 months and struggled with edema (see my post about edema on a different thread under general issues) and Csa side effects for 1.5 years. But the first 6 mos. were awful... now I have only the mildest of symptoms and feel great. I recieved the Atg treatment in Jan 2007. Hang in there!