[JEZ]

Originally Posted by B-OK

Dears,
I am very glad that I found this site. I wish from this site to be healthy and happy.

My wife felt herself tired for 2 months. I though that she was simply tired and persuaded her to go to Egypt to have a rest. After she returned with no improvement she went to our doctor, who suspected leukosis. I was almost crazy after such news, but than, after sternal punction and threpanobyopsy in March she was diagnosed with aplastic anemia. She was hospitalized with 27 PLT, 2700 WBC, 67 HGB and 20% of normal counts of granulocytes. Doctors said that she has a moderate AA of the disease and they look optimistic. She was treated in the best hospital in Russia to treat this disease and I pray she will be in remission forever.

She went through splenectomy at the beginning of May, and 1,5 weeks ago began Cyclosporine (Sandimmune) treatment with 600 mg a day. She left the hospital with 95 HGB, 2800 WBC, 36 PLT and 36% of normal counts of granulocytes. Due to adverse effects and high blood concentration of Cyclosporine the dosage was reduced to 300 mg per day. I pray this will be enough both for treatment and lack of adverse effects.

Today her HGB is 102, WBC decreased to 1600 (WHY???) and PLT decreased to 18000. Doctor said that this fluctuation could happen and is not a reason to worry, we just need positive trend. May be at Tuesday she will receive a PLT transfusion.

This disease is very rare and I was to search and read a lot to understand what it is. But, as far as I know, because of the available treatment protocols, success rate is nearly 80%. I hope we will be in success group.

You have a big experience with this type of anemia. Could you please advise us something - what to do and what not to do? How you felt yourself during Cyclosporine treatment? What are the most innovative drugs and protocols for this condition? I will highly appreciate all your help and information re. our situation.

With best regards,
B-OK

I have been diagnosed since December 2006. When I went in the hospital my platlets were at only 9000 and my red blood cells were low too. In january 2007 I recieved ATG (horse serum) IV, steroids, and went home on prednisone. I had a bout of serum sickness and was hospitalized again. Went home on prednisone again. My system did not respond until I went on Neoral cyclosporine. It took until mid- April before I responded and that was the last time I needed transfusions but my blood counts were still very low. My dose of cyclosporine was based upon my weight and I took 100 mg, twice per day. It must be taken twice per day as it is an immediate release drug. I did not have normal blood counts until November of 2008... they just steadily climbed with a few drops in between until then. I just had to go off of the cyclosporine however because it was affecting my kidneys too much. I am trying generic Imuran.... not sure yet if my bone marrow will stay good. This all reads like a list of medical interventions. I have had an excellent outcome so far.... but the first 6 to 8 months were quite traumatic.... there were times when I wondered if I would ever get better. There were times when I thought I was dying. Two and a half years later I am soooo glad I did not give up... but it was not an easy time. I wish I had known of these forums when I was going thru all that.... I hope you and your wife can be encouraged and stay the course... it is certainly worth it!

JEZ