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A myMPNteam Member asked a question 💭
Illinois City, IL

Had my lab work done and my platelet count went up to 770 from 701 in 3 months. Everything else is normal. Fortunately, I don't have any other symptoms or complications other than being 59. I see my doctor next week and worry he is going to suggest HU. I really am scared to start that medication due to the side effects.

December 19, 2024
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Answer Summary

Members shared their experiences with starting Hydroxyurea (HU) for Essential Thrombocythemia, with most beginning treatment when platelet... Read more

Members shared their experiences with starting Hydroxyurea (HU) for Essential Thrombocythemia, with most beginning treatment when platelet counts reached the 600s to 1100s or when additional risk factors like age over 60, blood clots, or hypertension were present. Several members reported tolerating HU well for months or years with manageable side effects like fatigue, successfully keeping their platelet counts in safer ranges through regular monitoring every few months. A recurring theme was the initial fear and hesitation many felt before starting HU, followed by reassurance from others that it has been used safely for decades as a first-line therapy, with the strong encouragement to ask questions, trust your doctor's risk assessment, and try not to let worry overshadow the potential benefits.

A myMPNteam Member

Glad this is working for you. It is helpful to hear the positive experiences with HU as it makes it slightly less scary.

December 22, 2024
A myMPNteam Member

I have PV. I take baby aspirin, never had blood removed, yet. I had some swelling in my leg, so my hemotologist ordered an MRI. It came back saying my spleen was hyper enlarged. I was dosed with one 500mg capsule of hydroxyurea, but then the swelling got worse, I ended up being in the hospital, getting two doses a day. I also got red cell transfusions. The blood counts got better, and I was released from hospital. Back to once a day hydroxyurea. I have an upcoming appt with the hematologist. At my last visit, she checked me over for side effects, said I was doing OK. I take other, scarier drugs for my kidney transplant, that leads to SCC and sutures on my head.

December 22, 2024
A myMPNteam Member

I, too, have ET with JAK2 mutation. My situation is similar, although I had a prior heart attack caused by a blood clot. I am 84 years old and have been on Hydrea for 4 months with only fatigue as a side effect. They did do a bone marrow biopsy prior to prescribing Hydrea. From everything shared by my doctor and from my research, this seems to be the right treatment.

December 22, 2024
A myMPNteam Member

Thank you. It's good to hear about other's experiences.

December 20, 2024
A myMPNteam Member

Hi Vicki5,
After my platelet count reached 1127, my doctor prescribed Hydroxyurea (HU). Honestly, I felt sad and spent an entire week contemplating the decision. Now, I’ve been on it for three weeks.
I think everything will be fine. Good luck!

December 20, 2024

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