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Essential Thrombocythemia: Looking for information and support

Blood Cancers & Disorders | Last Active: Apr 15 2:24pm | Replies (476)
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@1995victoria

I also had hair thinning and nail splintering. My hair is straighter, but not falling out. The nail splintering comes and goes. The worst HU side effect involved my bathroom, luckily my gut finally adjusted after a year. I never had any symptoms of ET Jak2, just elevated platelets that sent me for further testing. I just hope HU doesn't hurt my brain or organs. Recently I had my second shingles shot which might have lowered my platelets to almost bottom level of "normal" range. I also take baby aspirin. Don't want any clots causing stroke or heart attack

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bj87 | @bj87 | Feb 28, 2023

I took hydroxyurea for about 30 years due to anemia and high platelets. The last couple years I’ve had very low red blood cells (hemoglobin as low as 6 and 7 with hematocrit as low as 20. When it gets to 22 or 23 I get an infusion of red blood cells which takes it up to 24 or 25. I can function normally at that level and do anything I want. Just not for very long. I get tired. The highest it’s ever been is 27. I was switched to anagralide this past year. I have never had any other symptoms and am quite healthy at 87 years.

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