7th April 2004
Hi,
I've had AIHA for about 3 years now. I have been in hospital quite a few times before for blood transfusions which at one stage would get every 4 weeks.
What worked for me to slow the AIHA was a combination of Azathoiprine and Cyclosporine. But after weaning them off the AIHA relapsed quite severely. I went back on them with the prednisone but we all know prednisone doesn't seem to do much good especially at high doses.
My doctor was pressuring me to do a splenectomy about 1 yr after my diagnosis but I kept refusing even though at times i was so sick that i was willing to do anything to make it better. Sure, the cocktail of drugs i was taking was much more harmful in the long term than living without a spleen but i feel i it may have been the right decision. I started taking rituxan treatments a couple of months ago and it seems to have slowed the AIHA down quite reasonably. I have been able to come off the azathioprine and most of the cyclosporine for now and only taking 10mg of pred.
You never know if there will be a better treatment tomorrow or what not, but you should always consider your options and decide for yourself what you are ready for, taking into account your age as well. I am fairly young, 21, so i figured i wouldn't rush into a splenectomy since i still have a long way to go and dont want to increase my chances of a serious infection from such a young age, no matter how unlikely. However, its worth taking it out if you have no other safe options, its still better than taking drugs all your life.
Good luck to all and i wish every1 many years of good health!
Ehsan
I've had AIHA for about 3 years now. I have been in hospital quite a few times before for blood transfusions which at one stage would get every 4 weeks.
What worked for me to slow the AIHA was a combination of Azathoiprine and Cyclosporine. But after weaning them off the AIHA relapsed quite severely. I went back on them with the prednisone but we all know prednisone doesn't seem to do much good especially at high doses.
My doctor was pressuring me to do a splenectomy about 1 yr after my diagnosis but I kept refusing even though at times i was so sick that i was willing to do anything to make it better. Sure, the cocktail of drugs i was taking was much more harmful in the long term than living without a spleen but i feel i it may have been the right decision. I started taking rituxan treatments a couple of months ago and it seems to have slowed the AIHA down quite reasonably. I have been able to come off the azathioprine and most of the cyclosporine for now and only taking 10mg of pred.
You never know if there will be a better treatment tomorrow or what not, but you should always consider your options and decide for yourself what you are ready for, taking into account your age as well. I am fairly young, 21, so i figured i wouldn't rush into a splenectomy since i still have a long way to go and dont want to increase my chances of a serious infection from such a young age, no matter how unlikely. However, its worth taking it out if you have no other safe options, its still better than taking drugs all your life.
Good luck to all and i wish every1 many years of good health!
Ehsan