Cyclosporine before ATG - Newly diagnosed and New Zealand treatment options
My father was diagnosed with AA in June this year after GP took bloods and discovered bruising etc. After been admitted to our local hospital he was given blood transfusions and then a bone marrow tap that gave the diagnosis. He was then prescribed doses of prednisone and cyclosporine and sent home after 3 days to await an appointment with the main city hospital. After having a conversation with city doctor he was sent home again. He then contracted pneumonia and was hospitalised. Then contracted hospital bugs and was treated with extreme antibiotics. In conjunction with this has been receiving platelets and full blood transfusions and continuing with prednisone and cyclosporine. He is now home, bed ridden after beating all the infections. He has extreme muscle weakness and finds it hard to walk, sit up etc. Now we are in holding pattern for a new appoint in a month with city doc, waiting for bloods to go down and back and forwards to get transfusions.
Questions:
1)Has anyone else been prescribed cyclosporine before ATG? I have scoured dozens of forums and no one has mentioned it that I have found.
2)City doctor is all about Rabbit-ATG. We live in New Zealand which doesn't seem to have a lot of experience with AA. I have read Dr Youngs recent publications that states Horse-ATG is considered first line treatment. My father is 72 - it seems to me that we should be trying to get onto Horse as we don't have as much time to muck about! Advice?
3)I also wanted to find out if there was an easier way of working transfusions into our lives. Since being sent home we have only experienced the emergency room route as our results came back low on a Friday and we were told to wait until Monday unless we got the mouth ulcers or blood coming out anywhere etc...Thus the emergency room trip on Saturday at 5am. How have others managed their blood count maintenance and transfusions?
4) Best posts for understanding blood count language? Everyone here so good at putting down what their counts are and I don't know where to start. We have never focused on this detail yet and it seems we must.
Appreciate any help you can provide. We are resilient and determined but we know this will be a long road. Can't believe that 8 weeks ago my Dad was out working the farm....
__________________
Father 72 has been diagnosed VSAA June 2014, was on cyclosporine as first treatment 06/2014 - 09/2014. 8 weeks after diagnosis doctor believe he would not survive ATG Treatment. GCSF 3 weeks Aug 2014 Currently on Eltrombopag 09/14 Danazol 25/08/14.
|