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A myMPNteam Member asked a question 💭
Illinois City, IL

I have ET with the JAK mutation and take low dose aspirin daily. Fortunately, am symptom free besides high platelet count. Due to the reported side effects, I really don't want to start a chemo medication based on age alone. Just curious about other's experiences.

July 3, 2025
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Answer Summary

Members responded warmly to the question about starting Hydroxyurea (Hydrea) at age 60 with ET and the JAK2 mutation, sharing a wide range of... Read more

Members responded warmly to the question about starting Hydroxyurea (Hydrea) at age 60 with ET and the JAK2 mutation, sharing a wide range of personal experiences with the medication. Several members described staying on low-dose aspirin only for many years before starting Hydrea, while others found that Hydrea successfully lowered their platelets and reduced fatigue with few or no side effects. A recurring theme was that each person's situation is unique, and many encouraged open conversations with doctors to weigh the risks of high platelet counts against the potential side effects of treatment.

A myMPNteam Member

When I was first diagnosed in 2001, platelets were in the high 800'000’s and I’d had a shower of clots in both lungs. I was found to be JAK2 positive, and also to have Factor V Leiden, a genetic predisposition to clotting. I was put on warfarin, and told that had I not had the clotting factor, I would likely have hemorrhaged. 16 years later, I had a small hemorrhagic stroke, was taken off the blood thinners and put on a low dose daily aspirin as a nod to the clotting factor. I have been on Hydrea all but one year since 2001.

We all have an MPN, but our specifics are individual and so there is not a one size fits all. Our doctors can and should articulate for each of us their decision criteria and why our particular course of treatment.

July 12, 2025
A myMPNteam Member

Aspirin is like putting a band-aid on a deep wound; sooner or later, it's going to start bleeding out. I'm 73 and have PCV and have been on Hydrea for 10 months: 500mg per day and 1000mgs on Mondays and Thursdays. No problems, no issues, no worries. Platelets down to 350K. Your high platelet count, if it contiues to go up, will be an issue. You can do one of two things; get on a good medication that your doctor prescribes, or you can risk a stroke or throwing a blood clot into the lung when the platelets are so high you can no longer control them with aspirin. Your choice; your journey. Good luck to you.

July 11, 2025
A myMPNteam Member

I was diagnosed with ET, JAK2 at age 60. Stayed on low dose aspirin only until 63. Platelets creeped up to 600 and fatigue and leg/muscle pain was limiting getting through day and sleeping well . I started on hydroxyurea 500mg 4 days, 1000 mg 3days. Took a bit of time but platelets were at 350 last month and pain and fatigue are mostly gone . Doc reduced dose to 500 mg everyday. I have not noticed any side effects from the hydroxy .

July 6, 2025
A myMPNteam Member

Thank you for sharing your experiences. I see my doctor next week. Fingers crossed I can avoid it for the time being.

July 3, 2025
A myMPNteam Member

Ah hydrea ah nalet ilaç 😆

July 27, 2025

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