Anyone else find the side effects of Hydrea 500MG frightening?

I was diagnosed with ET about 1 year ago. My number started at about 850K, then went up 987K. After several increases to 500mg for a 4 days a week and 1000mg for 3 days a week, he said, "Your body is being problematic." Finally, my number got down to 440K, 2 weeks ago, after upping me to 1000mg a day for the last 8 weeks. My routine is to take the HU with an open spirit, so I say to myself (every morning), as I hold the pills in my hand, "These are my friends. Open, welcome, and receive them." Fear and resistance will increase the body's resistant to the pills and receive them as a potential enemy. They are my friends, for they are my partners in my health care and the best possible life I can have. I'm 76 and still go to the Y 2 days a week to work on 12 weight machines and walk about 8/10ths of a mile. My only secondary impact of the medication is fatigue that causes me to take 1-3 naps a day; but, they're only 10-15 minutes long. Otherwise, all is good, so far. I hope it goes as well, or nearly as well, for all the others and you.

@anahata1962 Just so you know, there are other drugs you can try for ET besides hydroxyurea if you are inclined to seek further treatment. My dad also had ET and did quite well with anagrelide. I think there are others here who prefer it over HU.

There are also Jakafi, Pegasys, and Besremi. Just info, no judgment intended.

I think it's a healthy part of aging to accept that we all have an expiration date and try to face it with confidence and grace.

Greetings! It has been very eye opening reading the many comments regarding Hydroxyurea. I was diagnosed with Thrombocythemia in 2021 with a platelet count of 800+ at the time. In the years since then up to this date my platelets slowly increased each year and are now at 2200. I had a bone marrow biopsy in 2021 and no cancer was detected at all so I was given Hydroxyurea and told to take an aspirin daily. I started taking the Hydroxyurea at twice a day and immediately I had constipation and a change in skin color mainly on my forehead first with darkening patches and nausea just a little. So, I stopped taking it because I did not want to be constipated, feeling nauseous daily and have my skin look considerably ruined. I researched natural ways to lower my platelet count and it went down for a while to 2000 and now back at 2200 but it never seems to go above 2200 and I'm 64 years old. I eat very well, 5'2" and 124.5 lbs and have weighed the same thing for about 45 years. I am just willing to take my chances with certain herbs, taking the aspirin daily and just maintaining a healthy lifestyle and trust in GOD to help me to be alright. I refuse to take a medication that is highly toxic to skin and cells as it states in the description of the medication when I looked it up. I have lived a wonderful life so far and when it's time, it's time and that's how I am approaching my life at this point. The Spirit never cease to exist and death is a transition to everlasting life outside of this physical realm. I applaud all of you who have taken Hydroxyurea and are managing very well. It's been 5 years and counting and no heart attack or stroke so far and so good. Thank you for reading my comment and I wish every well and a happy healthy life for the future.

@mjervis Before I started taking Hydroxyurea I hardly ever got colds or got sick. But this year I got 2 colds and I got and I got RSV. I go to the fitness center 7 days a week and exercise and use the weight machine. For my ET my doctor has me taking Hydrea as follows Monday, Wednesday and Friday I take 2 Hydrea and the rest of the days I take 1 Hydrea 500 mg a day. So for they went down I go every 3 months to get tested. Good luck with ET and stay active.

@biggermike3

Daunting for sure!

Please be patient with yourself. Every session is getting you closer to recovery.

I have had ET for 8 years but did not go over 1000 till this year. I am on Hydrea since Feb 1000mg per day. I don't have any severe side effects so far but do have joint pain. But I have been on cancer treatment before this which means I havnt been very active so maybe now that I am working in the garden again my joints are protesting! Always difficult to decide what causes what!

@janemc It was just like somebody turned the light switch and this happened. I have been going to physical therapy for 4 weeks now I go 3 days a week. They give me a good work out for the hour I am there. They're getting my brain to get the nerves to re learn the movement and strengthing the muscles in the affected area. It said that it could take up to a 1 or 2 years before you get full movent.

@biggermike3

I'm so sorry for what you are going through. How very difficult!

Having never heard of Parsonage-Turner Syndrome -- it's rare! -- I did a quick search.

Google AI says:

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Based on current medical literature, there is no direct evidence that myeloproliferative neoplasms (MPNs) specifically cause Parsonage-Turner syndrome (PTS).

However, MPNs and PTS share underlying mechanisms—particularly immune system dysregulation and inflammation—that might create a potential link, though it is not a widely established complication.

MPN patients are more prone to immune system dysfunction. PTS is widely believed to be an immune-mediated disorder where the body mistakenly attacks the nerves of the brachial plexus.

Inflammatory State: MPNs are chronic inflammatory conditions, and inflammation plays a key role in the development of PTS.

Physical Stressors: MPNs can cause severe fatigue, anemia, or other complications that may lead to unusual physical stress on the body, which is a known trigger for PTS.

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As if having ET weren't bad enough!

Again, I'm so sorry, bigger mike3. Please let yourself be mad this has happened. Getting struck by one lightning bolt of ET, then another lightning bolt of PTS, is NOT FAIR.

Please let us know how you're doing.

My Red platelet level is elevated but my Red and White blood is fine. I have been taking 500mg for about 1 year. In December 27 2025 I got shoulder pain. I went to a shoulder surgeon and he said that I don't have any tears or a bad rotator issues. About a month after that I noticed that I am weak in my right arm and I have no lateral movement . He sent me to a Neurologists. They did a EMG on my arms and shoulders. They said I have Parsonage Turner Syndrome. I have gone to therapy for 8 weeks. Still no lateral movement in my right arm. It says that it can take up to a1 ot 2 years before I will get full movement in my arm. I never had any issues with my shoulders till I have been taking Hydroxyurea. I am 70 years old.

Hi @sunnyshine. I love your @name! ☺️ By the way, welcome to Connect! And thank you for sharing your positive experience with hydroxyurea. It’s been a pretty reliable medication for blood diseases for many years and most people tolerate it fairly well with a few minor side effects. I’m happy for you that you’re having positive results and minimal issues.
If you don’t mind sharing, what was your diagnosis that has you taking the hydroxy? How long ago were you diagnosed?