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Anyone living with Essential Thrombocythemia with JAK2?

Blood Cancers & Disorders | Last Active: 3 days ago | Replies (745)
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Profile picture for eileen11108 @eileen11108

Are you taking a high dose of HU four days a week? I have never taken more than one 500 mg tablet, now at four days a week. My last lab was 515. That is great getting to 192 and I hope it stabilizes at that for you. LabCorp says 150-450 is normal.
Congrats! Eileen

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Replies to "Are you taking a high dose of HU four days a week? I have never taken..."
lindamarie63 | @lindamarie63 | Jan 8, 2025

I take 500 mg 2 times a day . My platelet count was 1100, its now down to the 700s

I get really bad headaches. Is this a side effect

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debhammel | @debhammel | Oct 26, 2025

@eileen11108 Yes, I take 1000 mg a day - a 500 mg capsule twice a day, Monday through Thursday, with only very minor side effects.

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Sandy Morris | @esperanzam | 3 days ago

@eileen11108
It takes 2 - 500mg tablets daily (one AM and one PM, I guess to spread out the impact 🙂 ) 7 days a week to keep my platelets at 500,000.
I guess whatever it takes, and it seems different for each patient. It has been that way for all these 11 1/2 years. Right now things seem to be pretty stable so I get my blood checked and see my doctor every 3 mos. at my Oncology Clinic.

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