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!

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

claire39 | @claire39 | Oct 2, 2023

I have been on Hydroxyurea for 6 years and the side effects are headaches, itchiness and fatigue which, in my opinion, are better than risking a blood clot. Having ET has caused me to make many changes in my every day life and my entire life style but I do what I can in a day and deal with it. I had major, major fatigue without HU so I am grateful for a few good hours a day. Do not be afraid to try it and if it is not for you talk to your doctor about another route. Good luck with your journey

ger63 | @ger63 | Oct 2, 2023

I have been on Hydroxurea for 3 1/2 years and have had some skin changes, dryness of the skin and hair, some fatigue initially. I continue to stay active . Write down questions when you see the doc. The side effects to the drug override a stroke in my opinion. I hope you find that by taking the Hydroxurea you are not negatively impacted.

dale1k | @dale1k | Oct 2, 2023

Diagnosed with PV and have been on Hydroxyurea for ~ 2 1/2 years… Currently taking 8500 Mg per week… That’s a lot of pills… Other than a slight thinning of hair, I have experienced no side effects and my monthly blood test results have been very good for over a year.. The idea of taking a chemo drug was and still is very concerning for me as well.. I know that this is an individual thing and know that many people can have very serious side effects that make taking Hydroxyurea intolerable… I stay very active, exercising every day, so maybe that is helping in my case ??
I hope that you find that HU doesn’t negatively impact you if it is necessary for you to take it..

bevjg | @bevjg | Oct 2, 2023

I have been on Hydrea for over a year now for essential thrombocythemia. 500 mg daily and I've had no side effects

kalamar111 | @kalamar111 | Oct 2, 2023

I have been on Hydroxyurea for past 14 months. 500 MG daily. Had headaches and tired for first 8 months. Now, no side effects

Lorne

View More View Less

Please sign in or register to post a reply.