[marc]

Hi Loretta,
I don't know alot about Campath or Zenapax yet. My hemo doc is investigating. I think they are given as an injection vs. the 4 day infusion of ATG. I heard about them from Dr. Maciejewski at the Cleveland Clinic. He is one of the leading specialists in PNH. When I hear more I can post the info.

I am sorry to hear you will need a stem cell transplant. I also matched 9 of 10 and was told the risks were to great. I wish you nothing but luck, good doctors, a positive attitude and fantastic health.

My hospital bills the insurance company between $13,000-15,000 per Soliris. I don't know why yours is more than double that. It seems crazy to pay that kind of money for any drug. But I guess if is saving lives it is worth the price.

I am usually fatigued most days. I can take about two hours of activity like working before I need to rest and/or sleep. The SOliris has helped in the pain department though. I was going thru Hemolysis on a continuing basis, almost daily, with high fevers and night sweats. The fevers and night sweats have stopped as has most of the pain. I still have some and still am in Hemolysis. My LDH levels originally dropped after the first five treatments but then rose again. We aren't sure why and are not sure if we need to up the dose of Soliris. Again, we are looking into it.

How was the second round of ATG (rabbit)? I had major reactions to my first ATG treatment and went thru two weeks of serious serum sickness. Did you have any bad reactions to Horse and/or Rabbit? I'd prefer not to go thru that again, but if I have to I will.

Marc