My battle
 

hello everyone..myself jhinuk.i got aplastic anaemia just after few months of my marriage.no prior sypmtoms only palpitation started occuring from nov 2010.i cudnt walk or talk properly.i was diagnosed with severe aplastic anaemia in jan 2011.treated with atg.i developed serum sickness soon after my steroid was withdrawn.presently on cyclosporin.taperring is going on.my latest counts are hb 7.platelets 1 lac 10 thousand.wbc 2.5.i am completely transfusion free since one and a half year.but my hb level fluctuates say 6-7.my doctors say nothing to worry it happens.but how can i stop worrying.i want to know how am i??i know a person treated with atg along with me who has passed away..this fear is always with me. i know death is unpredictable but i dont want to destroy my husbands life anymore.

any suggestions anyone??what do you think about my health condition??what about relapse chances??my doctors assures me but want to know your comments..all of you please help me to come out from this depression.

thanks..jhinuk..

Hi jhinuk,

I am curious why you are tapering off the cyclosporine now. Are you having serious side effects? It takes time for the marrow to repair itself. Cyclosporine is useful in supressing your immune system while this repair is going on. It seems like you had a response to the ATG/cyclosporine. So why is your doctor discontinuing the cyclosporine now? What is your current dosage? Have your counts decreased since you began tapering?

I am newer to the proess than you but I was diagnosed in March 2012. This is a very difficult disease. The uncertainty is hard to deal with on a daily basis. You seem to be a younger person than I. I am 51 years old male.

You are not alone in your worry and concern. Is a support group availiable? I have not gone to one yet but I do have a councelor I go to every other week. I also talk to a lot of people on the phone. Part of the issue with this disease is that it is very rare and you will not find many people that understand what you are dealing with. I will pray for you and keep you in my thoughts.

Scott AA diag 3/2012. ATG cyclosporine 4/12. HGB transfusion dependant. ANC 0.5 Plat 13.

Hello,

Has your Dr suggested having another Bone Marrow Biospy maybe you would get a clearer understanding of what is going on.

I wish you luck and hope that all is well for you. Keep faith and stay strong :)

Hi Jhinuk
When was your ATG? It sounds like it was maybe over 1 year ago. If I recall, some AA doctors will start tapering the cyclosporine at 6 months post ATG. Many patients still will then take a reduced dose of cyclosporine and some who had really good responses may even be able to go off of it.

However I think if the lab results start to fall during the tapering period, the doctor may choose to slow or stop the tapering for a while.

Does this sound right to everyone else?