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

Posted by eddb @eddb, Oct 1, 2023

I was diagnosed with having a blood cancer that looks and acts a lot like Polycythemia Vera (PV) about 6 years ago. I’ve been rolling along ok with (mostly monthly) phlebotomies, until a year or so ago. At that point my white blood cells and (most importantly) my platelet levels started to increase. The doc did a 2nd bone marrow extraction but I STILL tested negative for PV. After a CT scan and other tests were done to rule out any possible hidden bodily infections, my doc prescribed Hydrea 500 MG. I filled the script about a week and a half ago…and it is still sitting in a bag on my counter, unopened. I got seriously freaked out when I researched the drug and found all those nasty side effects associated with the drug.

Now, I’m sitting here knowing that my platelet count as of 3 days ago was 987 (over twice the normal level limit) and that I could throw a blood clot at anytime. I was holding off taking the drug, to get an appointment with a hematologist/oncologist for a 2nd opinion, but that appointment isn’t for another 10 days - I’m a nervous wreck! I do not want to take the chance with hydrea but I don’t want to clot. I don’t even have a real diagnosis other than suspicion of bone marrow cancer or the beginning stages of it….

I’d be curious to hear about what others have experienced while on this drug. Much appreciated!

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Profile picture for mjervis @mjervis

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!

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@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.

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