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Old Thu Jan 31, 2013, 11:35 PM
McScoover McScoover is offline
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Join Date: Feb 2010
Location: Long Beach, California
Posts: 1
MacScoover

II. was active on Aplastic Central, but felt dismissed when most moved here. Rediagnosed in 2007 with LGL leukemia, not included at this site. The way I see it I may still have Aplastic Anemia as a condition, and LGL as the disease causing it. LGL Large Granular Lymphocytic Leukemia is a bone marrow cancer of the immune system.

I went back on red cell and platelet transfusions about three years ago. Then when nothing was working, we tried A steroid Dexamethasone. This improved my red cells to just above threshold, and I have been red cell transfusion free for about a year. Platelets are still every 10 days. Ferritin went up to over 3000. This does not seem right since I was getting red cells ever 6 weeks for only a couple of years before starting the steroid dexamethasone. Doc never suggested ferritin test at any time until I asked for the test.

After reading this thread, I tried Wheat Grass, but with no results. This thread has no new post since mid 2012. Is this still working for anyone? Maybe I got the dosage wrong.

I have heard that steroids could possibly cause a false ferritin reading, but my doc said only that there was no study for this. My cardiologist said he sees no signs of iron storage in heart.

Forgive any odd writing. I can no longer see due to rapid thickening of cataracts caused by the steroids. They will be removed at Jewels Stein Eye Center at UCLA later this month (yea!).

Thanks
Scotty
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