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@debhammel

As long as you are not experiencing serious side effects and the HU is lowering/controlling your platelet count, you can take it indefinitely. I'm sure others will chime in soon and you'll see that we all have different experiences with this drug. I was diagnosed in October, 2023 at age 67. Platelet count was 792 and I started on 500 mg of HU 2 times a day, 7 days a week. As my platelet count dropped my dose was reduced and I have been on 500 mg 2x a day, 4 days a week for about the last year. My platelets hover around 200 and my heme/onc is happy (as am I). My only side effect was I initially had sharp, sudden and very brief headaches, which subsided as my body adapted and as my dosage was reduced. I also experienced some hair loss but that has also subsided. Good luck to you on this journey!

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Replies to "As long as you are not experiencing serious side effects and the HU is lowering/controlling your..."

@debhammel Thank you so much for your response and your experience with Hydrea. I’m so grateful to have found this forum. Wishing you good health and high spirits!

I am ET JAK2+ and 79 years old. I too have experienced the sharp, sudden headaches. The first one lasted for hours and since then have subsided to perhaps 5 or 10 minutes and sometimes not at all. They begin within about an hour from taking the HU and are very clearly not from any other cause - the timing is predicable. They do not keep me from any planned activity. I take 500mg a day M-W-F. My platelets have decreased steadily from 647 to 387 inside of 3 months. And my doctor has also made it clear, at least with what they know right now, the HU is for life.