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Essential Thrombocythemia: Looking for information and support

Blood Cancers & Disorders | Last Active: Nov 4 11:06am | Replies (597)
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@jewelfaux

I don't know yet. I just started 1000mg a day two days ago. I had been taking 500mg then 1000mg alternately. My doctor doesn't think the issues I've been having are anything to be concerned about. I had intestinal pain with bloody diarrhea ( might be IBS?) 3 weeks ago that a gastroenterologist is? looking into and 10 days later swollen legs. I'm fine now.

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Replies to "I don't know yet. I just started 1000mg a day two days ago. I had been..."
eileen11108 | @eileen11108 | Mar 18, 2023

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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