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

Posted by anavleek @anavleek, Apr 9, 2025

I was just diagnosed with ET. I am 61 years old. My platelet count is 640k right now.
Doctor suggested I take a baby aspirin everyday and HU. I am hesitant about taking HU. I have heard of doctors waiting till the platelet count is higher to take HU.
Any insight? How bad is HU for your body, I was reading it can cause cancer too.
Thank you

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ednels | @ednels | 20 hours ago

In early 2025 I started to have night sweats and fatigue. I was diagnosed with ET in Aug of 2025 and started on HU at 500mg twice daily. Platlets went down and stayed within acceptable range. No more night sweats. Then in Oct of 2025 I was hospitalized after I woke up one morning and was unable to sit up in bed with a 102 deg temp. Diagnosis was "fever of unknown origin". Drs tested me for all kinds of diseases but tests were all negative. Ended up receiving two types of antibiotics which took care of the fever. Disharged and continued with HU and was fatigued but otherwise ok.
Earlier this month I had a recurrence of the fever/weakness and was hospitalized again. New oncologist stopped the HU and is recommending Besremi injections which I will start next week. I am now also having stability problems. Get dizzy easily and must use a cane to get around. Am curious about others' transitions from HU to Besremi. Abrupt halt or did you first reduce HU when you started Besremi?

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Profile picture for janemc
janemc | @janemc | Apr 24 9:38am
In reply to @sorrento10 "@janemc I was diagnosed with ET in November 2025. A blood test in July showed that..." + (show)
Profile picture for sorrento10 @sorrento10

@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.

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@sorrento10

By taking your meds and being closely monitored by your oncologist, you're doing everything right.

My best wishes to YOU! Please keep us posted on your blood counts.

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sorrento10 | @sorrento10 | Apr 24 6:48am
In reply to @janemc "Hello, anavleek. An ET diagnosis is really scary, especially since you'd probably never realized such whacky..." + (show)
Profile picture for janemc @janemc

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.

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@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.

REPLY
1 reply
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rivieramaya2009 | @rivieramaya2009 | Nov 18, 2025
In reply to @diannerk "@rivieramaya2009 Thank you! Yes, I am lucky it is recognized today and there is an answer..." + (show)
Profile picture for diannerk @diannerk

@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.

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@diannerk MF is the abbreviation for Myelofibrosis. It is one of three diseases that are MPN’s (myeloproliferative Neoplasms. MF being the most serious. Take care!

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diannerk | @diannerk | Nov 18, 2025
In reply to @rivieramaya2009 "@diannerk In 1992 or 93 I was diagnosed with ET. My platelets were 1.5 million and..." + (show)
Profile picture for rivieramaya2009 @rivieramaya2009

@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.

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@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.

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1 reply
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jbcl | @jbcl | Nov 14, 2025

So sorry to hear about your hip and ankle injury. That has the be so painful and frustrating. Praying all goes well with the CBC check. I was on Hydroxyurea for one month before the first check..... don't be discouraged if the numbers have not changed ...they will!

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scienceteacher | @scienceteacher | Nov 13, 2025
In reply to @jbcl "I am 71 and taking a daily aspirin and 500 mg of Hydroxyurea. I have been..." + (show)
Profile picture for jbcl @jbcl

I am 71 and taking a daily aspirin and 500 mg of Hydroxyurea. I have been taking the latter med since the end of August. My platelets have dropped from 548 to 335 over the last two months .
I have had no side effects. I am older than you which creates a higher risk for stroke or heart attack, so based on how I feel and no side effects, I will continue on this path. I see the doctor early January.
I continue to go for long walks daily and eat healthy and hydrate.
I prayed about it and feel at peace with my decision, but it is a personal one. Praying you will find the right course for you!

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@jbcl I am also 71 and just started Hydroxyurea 500mg early last week. Tomorrow I will have my first CBC to check for effects. It would be wonderful if I had the same results as you.
I look forward to long walks in the spring as I broke my ankle and hip in March and the surgeon told me it would be a one year recovery. I'm holding him to that!!

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jbcl | @jbcl | Nov 13, 2025

Good for you staying so active!!
I have ET.
And you are do right....a God is in control and has you in His precious hands!

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Profile picture for rivieramaya2009
rivieramaya2009 | @rivieramaya2009 | Nov 13, 2025
In reply to @jbcl "I am 71 and taking a daily aspirin and 500 mg of Hydroxyurea. I have been..." + (show)
Profile picture for jbcl @jbcl

I am 71 and taking a daily aspirin and 500 mg of Hydroxyurea. I have been taking the latter med since the end of August. My platelets have dropped from 548 to 335 over the last two months .
I have had no side effects. I am older than you which creates a higher risk for stroke or heart attack, so based on how I feel and no side effects, I will continue on this path. I see the doctor early January.
I continue to go for long walks daily and eat healthy and hydrate.
I prayed about it and feel at peace with my decision, but it is a personal one. Praying you will find the right course for you!

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@jbcl do you have MF or ET? I’d gladly go back on Hydroxyurea, but have you beat on birthdays 🎉. I’ll be 76 in a few weeks!😊. I’m active and do Pilates 3 days a week and walk everyday. And most importantly am praying. God is in control!

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jbcl | @jbcl | Nov 13, 2025

I am 71 and taking a daily aspirin and 500 mg of Hydroxyurea. I have been taking the latter med since the end of August. My platelets have dropped from 548 to 335 over the last two months .
I have had no side effects. I am older than you which creates a higher risk for stroke or heart attack, so based on how I feel and no side effects, I will continue on this path. I see the doctor early January.
I continue to go for long walks daily and eat healthy and hydrate.
I prayed about it and feel at peace with my decision, but it is a personal one. Praying you will find the right course for you!

REPLY
2 replies
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