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Essential Thrombocythemia: Looking for information and support
Blood Cancers & Disorders | Last Active: Apr 15 2:24pm | Replies (476)Comment receiving replies
Welcome jewelfaux,
When were you first diagnosed with ET JAK2 and what was your initial platelet level?
I hope your gastroenterologist is going to follow up with testing. Should your legs continue to swell maybe you might consider seeing a cardiologist.
I was diagnosed in 2022 with ET JAK2. I had labs and a bone marrow biopsy. My platelets had been slowing rising for a few years so my GP referred me to a hematologist when they reached 621…then took a jump to 735. I took 500 mg daily HU and then lowered to 500 mg every other day. I was just allowed to stop taking for about a month as I was under a lot of stress moving and many headaches, Just had labs…platelets are 564 so I will be going back on HU. I see my hematologist in a week.
Best wishes, Eileen
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I was 1st diagnosed in November of 2022. My platelet count was 759. While taking full aspirin it dropped to 630. 500 daily HU was added in January, then platelets increased in February to 832, HU now 1000 daily (still on 325mg aspirin). I do see a cardiologist twice s year. My platelets are never lower than yours. Does the HU help you? I hope so. How old are you? I'm 74.