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@eileen11108

Welcome @ontheverge

I am 79 and was diagnosed last year with ET JAK2 by labs and bone marrow biopsy. At diagnosis my platelets were 735. I started taking 500 mg daily HU (Hydroxyurea). I take a blood thinner for AFib so I do not take aspirin. Within two weeks I had daily headaches, feeling light headed and a first ever vertigo attack. I was taken HU for a month and then back on it every other day…very few headaches. I was thrilled when I had a platelet count of 434…my goal is to have platelets 450 or below.

I went through a very stressful period moving….many headaches and palpitations, Hematologist let me stop taking for a couple months, My platelets are 528 and I just started HU 500 mg but only on Monday/Wednesday/Friday…no headaches. Next lab is 6 weeks later. Hoping I can continue this.

I am now taking it with breakfast. You need to take with a full glass of water. I wet my lips and swirl water in my mouth, swallow the capsule, and follow up with rest of the water…helps prevent mouth sores. You need minimum 64 ounces of fluid daily to help rid the toxic effect of HU. I do not even touch the capsule. I tip it out to a different cap and tilt it into my mouth.

Good luck with your journey, Eileen

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Replies to "Welcome @ontheverge I am 79 and was diagnosed last year with ET JAK2 by labs and..."

Thanks for sharing your history. It makes me hopeful that the headaches could eventually diminish. I figured out tipping the capsule into a the cap of the vial then tossing it into my mouth to comply with the do not touch medication recommendation. I usually drink it with a full glass of water but will be more mindful of that. I would love to take it with breakfast if I didn't have an all day headache after. Perhaps I can work up to that eventually. For now I will keep up the 500mg with supper until I see my hematologist in three weeks.