|
Marc - I too have AA & PNH; my AA diagnosis came in August 2005; PNH was this May. I was started on Soliris at the end of July; my LDH is also coming down well. Is that the only thing they test on you to see if the Soliris is working? The only downside of the Soliris is the cost. My insurance company is being billed $37,710 for each treatment; are you also seeing figures similar to this?
I relapsed in late June of this year and had a second round of ATG (horse in August 2005, rabbit this second time). I'm responding somewhat, but also need a stem cell transplant with no sibling match. I've not had either the Campath nor the Zenapax. I've never even heard of them; are they similar to ATG or are they daily medications?
Have you been told how close possible donor matches are for you? I have 4 people that match me 9 out of 10; that sounds pretty good to an accountant, but my doctor says that's too risky.
How do you feel day to day - pretty good or fatigued?
My best to you
Loretta B
__________________
Loretta diagnosed AA 8-17-05; treated with ATG in Aug 2005 and again in June 2007; currently on cyclosporine. Diagnosed with PNH May 2007; currently on Soliris
|