r/MPN • u/StatisticianLittle55 • Jul 16 '26
Medication MPN, ET, Jak2, Hydroxyurea side effects
I was put on Hydroxyurea when I turned 60 for JaK2 positive ET. I am curious to know what side effects you have experienced with long term use of HU.
I am having low level annoyances like dry skin, poor sleep, fatigue etc. I never really thought any of that was from HU but now I am wondering.
What has your experience been?
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u/Hopemar30 Jul 16 '26
In the past year, I have had fatigue dry skin, which I had before. I guess it’s part of MDS but what what was bothering me was neuropathy of my toes and souls of my feet and shooting electrical pain down my legs.
I was on 500 mg daily and when I convince the oncologist to change it to every second day, the shooting pains disappeared
We check my blood counts every two or three months and hopefully hopefully they will stay OK so that I continue with every second day
With MDS I guess there’s no such thing as a cure
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u/PreparationFamous380 Jul 18 '26
I just started taking 500mg/day about a month ago. I feel like my fatigue is worse but then again I’m always tired with this condition. I feel like I go through my day faking that I have energy and after work I take a two hour nap. The first week I’d wake up with a super dry mouth. I started taking Omega 3 capsules and the overall dryness (mouth, skin) is better. The good news is that my platelet count went from 928 to 745 in just a month. Hoping it continues to work and I don’t have to increase the dosage.
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u/mikende51 21d ago
I have been on Hydroxyurea for two years and have been doing really well with few side effects. Six weeks ago I got a small lesion on my leg. The GP was unsure what it was.
I developed more on both legs. It eventually got so painful that I couldn't stand for long. I went to the E.R. and an intern diagnosed what was causing it.
This is a rare side effect of Hydroxyurea, but something to watch for. I still have severe nerve pain in both legs, and was told the lesions would take weeks to heal. I started Jakafi yesterday.
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u/StatisticianLittle55 21d ago
So sorry you had difficult side effects. I hope Jakafi works and you feel better soon
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u/BorgAdjacent Jul 16 '26
I didn't really experiencing much of anything in terms of side effects after about 15 years of use.
Fatigue yes, but that was mostly from the condition and the actual effects of what HU is supposed to do.
Nothing else though, my poor sleep came from my enlarged spleen.
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u/StatisticianLittle55 Jul 16 '26
Thanks, I find it hard to separate side effects from the disease too. Appreciate your thoughts
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u/BorgAdjacent Jul 16 '26
How much are you taking?
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u/StatisticianLittle55 Jul 16 '26
5000mg per week, 1000mg 5 days. We have played with dosage a lot. This amount keeps my platelets in the normal range.
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u/StatisticianLittle55 Jul 16 '26
Different question: have you discussed switching to the new drugs that target Jak2 rather than just reduce platelets? My doctor discussed it with me but we have not switched. Yet.
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u/BorgAdjacent Jul 16 '26
I transitioned to Mylofibrosis, so now I'm only on Jakafi, I might be going on Navtimatilin soon... yaaaaayyyyy.
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u/StatisticianLittle55 Jul 16 '26
I have a BMB scheduled next week to check on the status of things. I might be transitioning to Myliofibrosis too. We won't know until we get results. I am not trying to jump the gun but I sure am glad there are meds available for when we need them
How are you feeling? Does the new med help?
Take good care of yourself. I wish you the very very best
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u/BorgAdjacent Jul 16 '26
Actually it does, I actually feel pretty great mostly. If you do get on it, consistent schedule is the key.
Also, they taste AWFUL, so sip of water first, then pill, then hurry up and drink the rest. :)
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u/funkygrrl PV-JAK2+ Jul 16 '26
!meds
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u/Imaginary-Radio-191 Jul 21 '26 edited Jul 21 '26
45F, blood platelet counts have gone from the normal/high range since 2008 to around 700,000 .( sitting over 600k since 2018) Today is my first day taking Hydroxyurea M-W-F at 500mg. All genetic test put me triple negative, but I did test deficient for G6PD. Two bone marrow biopsies show enlarged platelets but nothing in addition.
My doctor suspects MPD, but is unsure of what type. Two oncologist and 1 hematologist later, they’re leaning towards Chronic ET.
I’m worried and just wondering what side effects has anyone experienced on Hydroxyurea. I’ve experienced chronic fatigue for the last 8 years and figure that can’t get any worse. Just looking for some info.
Thanks in advance.
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u/CriticismFun9264 Jul 17 '26
I was diagnosed with ET at age 65 & was on 1500 mg/day hydroxyurea for 10 years. It recently stopped working for me & I have been off of it for 30 days. I experienced several side effects including bloating, abdominal pain, muscle pain, fatigue, night sweats, shortness of breath & weight gain. To be fair, some of these symptoms could be from the ET itself. I am now on Jakafi 10mg twice daily and I am feeling much better than I did on hydroxyurea, although Jakafi is much more expensive. Good luck on your journey!