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Old Sat Dec 17, 2016, 10:56 PM
Ellen McDonough Ellen McDonough is offline
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Join Date: Sep 2011
Location: United States,Denver,Colorado
Posts: 48
Questions about long term weaned off Cyclosporine

I had weaned off of Cyclosporine 12/2016 for my severe aplastic anemia.
It has taken a good year or more.

I have had increasing fatigue and am now so exhausted most days off from work and weekends I sleep 15 hours a night and still feel fatigued.
It feels like my body is using everything to make cells or something.
Lately climbing stairs and hiking at altitude are causing the same feeling I had before I was diagnosed with SAA last time- dizziness and shortness of breath and heart racing.It has brought to my attention that I have been making a few mistakes on my job recently, which I never have made before.
I haven't had a bone marrow biopsy since 2011.
I was diagnosed in 2009 with SAA. Got horse ATG and Cyclosporine .Have been pretty stable for the past few years with peripheral counts.
I have been neutropenic since April-2017 and my LDH is rising.Last LDH was 245.
My local hematologist is good but I am his only experience with aplastic anemia. My last counts on 10/20 WBC-3.2, Hbg-13.2, Hct-39, platelets -159 , neutrophils-1.2. Neutrophils have been running 1.0-1.2.So below normal but not dangerously low. But still I had been running 1.8-2.0 all along for years before going off Cyclosporin .
Could the SAA be returning after all these years of being at bay?
I'm wondering if it's time for another BM biopsy?

Thanks,
Ellen
__________________
Ellen McDonough--Denver,Colorado

[57 year old,diagnosed with Severe Aplastic Anemia 4/2009.

Last edited by Ellen McDonough : Fri Nov 3, 2017 at 06:51 AM.
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