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Real members of myMPNteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
July 30
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Answer Summary

Members rallied around someone feeling overwhelmed about starting Hydroxyurea (HU), sharing a wide range of personal experiences that were... Read more

Members rallied around someone feeling overwhelmed about starting Hydroxyurea (HU), sharing a wide range of personal experiences that were mostly reassuring. Several members described early side effects like fatigue, nausea, and mental fogginess that resolved within weeks, while others noted longer-term concerns like hair thinning, brittle nails, and the need for regular skin and dermatology checks. A recurring theme was that dosage often takes time to adjust, but many found their blood counts stabilized and they were able to live full, active lives on HU.

A myMPNteam Member

I have been on it for 8 months. It definitely got my platelets in a good range. I gained a couple pounds but thankfully that’s been the only side effects so far.

August 9 (edited)
A myMPNteam Member

i take 2 times 500mg since 2015 , those skin effects are extremely rare !

August 18
A myMPNteam Member

I’ve been taking it for 1 and half years. I started off with 1 capsule a day (500) mg. I had very little side effects. I did get nauseous when I first started taking them but it subsided. My labs started to all go high so dr put me on 2 capsules a day. I feel so much better and blood work is good. Hang in there I’m praying you get great results !!

August 18
A myMPNteam Member

I took HU for 15 years. Very lose dose and gradually increased to 500 mg 2 PD, I then swited to Jakafi, then Ojarar, then Jackafi 2 more times. I am now back on HU 500 every other day. Will see. Still my drug of choice, I had Kidney issues with Ojjara and Anemia with Jakafi. Also the Jakafi and Ojjaara, HPB and high Cholesterol.

August 5
A myMPNteam Member

I have been on HU for a year. I was very uncertain at first about starting the treatment as the prospect of chemotherapy and the drug side effects warning sheet were both scary. However after 7 months and some gradual adjustments to dosage my blood counts settled back into normal range. I now take 6000mg / week and my blood counts are stable. I do have some side effects - some fatigue, hair thinning, brittle nails but they are manageable and HU does seem to act relatively quickly and is simple to take even when travelling on holidays. You do need to take care in the sun and have regular dermatology checks.

August 5

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