Essential thrombocythemia (ET): When to start hydroxyurea (HU)?

@diannerk In 1992 or 93 I was diagnosed with ET. My platelets were 1.5 million and no side effects from disease. Hydrea was able to get them down to 400k. Another drug came on the market Agrylin, which the doctor thought might be a safer drug. Took it for a few years. Dr was retiring and told him since my blood counts were normal that I was not going to take any more meds. This was before high platelets were classified as cancer! They called it a blood disorder. For at least 20 years, my platelets remained normal until Jun 2025 when I was diagnosed with MF. Hopefully, you’ll do well with this drug since it’s been on the market for years. Wishing you well.

@rivieramaya2009 Thank you! Yes, I am lucky it is recognized today and there is an answer to the problem. And good luck with your on-going health. What is MF? I'm new to all this.

Hello, anavleek. An ET diagnosis is really scary, especially since you'd probably never realized such whacky things can happen to our blood.

This forum is where you can learn all about ET and HU. Just use the search bar at the top of this page to find discussions on any question you may have.

As you will see, some people do have side effects from HU.

But for most of us, it's magic.

HU has been used for decades, not just for ET and other blood cancers, but also for sickle cell anemia and some mouth and throat cancers. It is relatively inexpensive and it's widely available.

Did I want to take a chemo drug? No! I was scared to death to take that first capsule.

But as HU began bringing down my platelet count, and giving me my energy back, I started realizing how lucky we are to have a drug that works for us.

When I was diagnosed, my oncologist told me that not only was ET making me exhausted, it was depleting my bone marrow. You have to take this diagnosis seriously. No supplement or diet change will address the mutations that trigger ET. But HU works.

I like to take my HU and aspirin with milk, and I never take meds on an empty stomach.

Please let us know how you're doing. You're among friend here.

@janemc I was diagnosed with ET in November 2025. A blood test in July showed that my platelets were 600. Having had a more diagnostic blood test by a heamotologist in 2 months my platelets had risen to over 800 in just 2 months. I was diagnosed to have the JAX2 mutation.
This diagnosis came out of the blue as I have had no major illnesses during my life - Ive had 2 hip replacements during my sixties . I am 87 years old live alone and generally manage very well domestically.
I have been taking 500mg a day for 5 days and 2x 500 on Sat and Sundays plus small aspirin every day.
I'm being monitored. My white cells have been dropping so its worrying .
My side effects are heart burn, frequency and Ive had a UTI recently. Also whether associated or not my weight has increased which Im trying to keep under control.
While I hate having to take Udrea I am aware there is no other option. Best wishes to all fellow sufferers.