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JAK2 V617F Essential Thrombocythemia: Hydroxyurea causes headaches
On routine annual labwork in December of 2022, platelets were elevated (over 600 X1000/UL). At referral appointment with a hematologist in January 2023, platelets were 649 X1000/UL and my iron panel had low numbers. After six weeks of iron supplementation, platelets were 628 X1000/UL. Subsequent bone marrow biopsy detected "JAK2 V617F (c.1849G>T) mutation."
The first morning I took a hydroxyurea 500mg capsule I had the second migraine I've had in my 70+ year life. Since then I've been taking them with supper and wake up every morning with a sharp headache that usually resolves with a cup or two of coffee. I had another migraine when I took hydroxyurea on an empty stomach one night and had a migraine aura for several hours another morning with a less severe headache. If I forget or intentionally skip an evening dose, I wake headache free.
I rarely had headaches of any type before starting the hydroxyurea. After 15 days of once daily treatment, platelets were 572 X1000/UL. The plan is to continue once daily for two months, then reassess platelet level at the end of June. I'm not sure I can tolerate another month of headaches. My only risk factor is age >60. I am physically active and at a healthy weight with no other major health problems or medications. I have taken low dose aspirin once daily for years (NOT for cardiovascular risk factors) and continued that after the ET diagnosis.
I am tired of giving myself a daily headache which often wakes me early in the morning. I am considering stopping the hydroxyurea and am curious about other's experience. Of course, I will consult with my hematologist but they are away and not currently available.
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You can get more information on Anagrelide on Chemocare.com. My hematologist gave me the information on Hydroxyurea from the same website.
Eileen
OMG! Tell your doc about the headaches.
Mine told me coffee is ok, and can be helpful. Write down everything you think might be related so you can discuss at your next appt.
My 2 cents? If your appt is more than a week away, call or text your doc with your immediate issues, and say you were certain he/she would not have wanted you to continue with something that could have “adverse effects”. Those are important words to get your docs attention.
Good luck!
With higher platelet numbers you are putting yourself at a higher risk of pulmonary embolisms. From experience, I will tell you, PE's are no fun and can be deadly. I have no side effects from HU. Have been on it for about a year. I, too, am JAK2 positive.
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1 ReactionUpdate: I continued HU 500mg daily until I saw my hematologist three weeks ago. The daily headaches persisted unless I missed a dose. Lethargy and brain fog seriously interfered with my previous level of activity. At the appointment, platelets were in the 400 range and the remainder of my CBC and chemistry panel results were within normal limits. We discussed the headaches and my low risk except for age (71).
I stopped the HU and will continue 81mg aspirin twice daily. The headaches, lethargy, and brain fog resolved soon after discontinuing HU, and I got busy catching up on yard and garden chores and training for an end-of-summer backpacking trip on rugged trails.
My platelets have never been higher than than the 600 range. If they should go higher than that at regular rechecks, I will reconsider HU.
Thank you all for your replies and responses.
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