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What are most common side effects when starting HU (Hydroxyurea)?
Blood Cancers & Disorders | Last Active: Aug 15 9:42am | Replies (194)Comment receiving replies
The varying side effects are interesting to me. I have them all! I started on HU in March 2025 and my 500mg daily dose has reduced my platelets from 1200 to 370! I HAVE lost hair! Every day my hairbrush has the evidence and it’s way more than ever before! I too have shin bone aches at night, vivid dreams, and extreme fatigue by 2:00 in the afternoon and I’m taking HU at night before bed. Jabbing toe pain is now occasional, but was terrific before HU! I take Aspirin ever other day and bruise spots are showing up. I’m 73, female, have JAK2, TET 2 and ASXl1 mutations.I want to stay hopeful—it’s hard with hair thinning and symptoms that are upsetting! I get it—you’re not alone!
Replies to "The varying side effects are interesting to me. I have them all! I started on HU..."
I started HU with a night dose but after 5 weeks decided to change to a morning dose. This change gave me better sleep, vivid dreams gone, less need for using bathroom, not waking up at 5am, and fatigue doesn't hit until bedtime. It's only been a few days since changing to morning dose but it seems worth the change so far.
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Have you been tested for gout? My JAK2 was determined after I complained of bad knee pain (and my toes hurt too) and it was gout. Easy fix, allopurinol. I still have pains in my legs and fee at night, but better.
And, my hair brush also tells that story.