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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.

When Did Your Doctor Suggest You Start HU?

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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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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