What was your platelet count before starting Hydroxyurea?
I am a 74 year old female diagnosed approximately 2 years ago with ET with Jak 2 mutation. My last platelet count was 565 and have been taking 2 low dose asprins daily since being diagnosed. My oncologist is encouraging me to begin taking HU since my count is over 400. I have an appointment with a Hematologist/Oncologist specialising in MPN next week and I am wondering when others who have ET started taking HU or other medications to lower their platelet count.
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At 69, my platelet count was in the 700s when I was diagnosed with ET.
That prompted my oncologist to immediately put me on a daily low-dose aspirin and HU.
Three years later, my count's staying below 500. That's still "high," but I feel so much better than when I was in the 700s.
It's great that you can see an MPN specialist soon. Please share what you hear at your appointment!
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7 ReactionsI was diagnosed in October, 2023 at age 68. My platelet count was 792 and my Heme/Onc started me on HU immediately. Platelets dropped like a stone, leveling out around 200 and I have been fortunate to have only one side effect which was severe, very short headaches that resolved within about two weeks of starting the medication. And when I say short, I mean a duration of no more than 30 seconds. I'll take this as a win!
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8 ReactionsMy platelets were almost 800 at age 63. But when you start HU depends more on your age, mutation type, and clot history than platelet count.
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7 ReactionsI was diagnosed with 1.1 million platelet count, CALR.
Yes, I returned to the lab a day later for a 2nd test to insure it wasn’t a lab error!
I took 1 500 mg HU daily for about 1.5 years to get to 400.
Now I take 1 500 mg HU 4x weekly.
Platelet count and dosage fluctuates with non-related medical issues.
Full knee replacement surgery was worse than getting used to HU…
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9 ReactionsI am a 61 year old female diagnosed with ET, JAK 2 mutation, this year with platelet counts 575. Otherwise, extremely healthy. my hematologist/oncologist is willing to just monitor my counts every 3 months and just take a baby aspirin daily. I am hoping to avoid any other medication for awhile. I am trying to follow an anti inflammatory diet as well and daily exercise. We shall see if any of it helps stabilize my counts
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6 Reactions@nohrt4me I was 56 diagnosed with PV JAK2+ almost four years ago. HU can absolutely be prescribed solely to lower platelet count. I was over 800 and as long as I stay under 600 they are content. Currently hover around 400-450. No history of clots and I was pretty young for my diagnosis. I’ve seen three different specialists and they all use HU as a first resort to lower platelets and also red/white counts.
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8 ReactionsMy count kept climbing over 3 years 600, 700, 800......I asked my primary why, and he sent me to hematologist, who did many tests and bone marrow biopsy and aspiration. In my 70s it hit over 1,000, and went to cancer hospital and started on HU with baby aspirin. My count has been under 400 now for about 5 years, and my philosophy is I'd rather take HU than have a stroke or heart attack.
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12 Reactions79 years old male here. JAK2, ASXL1, ZRSR2, TET2. Prefibrotic Myelofibrosis.
Diagnosed in 7/2025 with platelets at 1.4 million. Took 2,000 Hydroxy a day for 5 months and now maintain 600,000 platelets with 1,000 6 days a week and 1,500 1 day a week.
Fatigued beyond belief.
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7 Reactions75 year old male. Platelet count Jan 2026 in 900 range. Diagnosis PMF. HU started Feb: 5 months later Platelets 250 range. Have been on low dose aspirin for 15 years also. No side effects to date from the HU.
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4 ReactionsTwo years ago, at age 70, I was diagnosed with ET due to a JAK mutation and high platelet count. I was prescribed 500 mg of Hydroxyurea daily and a baby aspirin. Initially my platelet count was 548. At the last checkup in June, my count was 230.
I have been blessed with few if any side effects. Those that are around may be due to my age??
Everyone's journey is different. Thankful for this website for help!!
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