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Anyone else find the side effects of Hydrea 500MG frightening?
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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@nohrt4me I don’t think any organization will take an ET patient’s platelets. My hemo/onco told me that was not an option. Your body may want to replace those platelets with even more than you had. Hydrea has been around for over 50years. It comes with some side effects like fatigue and the skin darkening, but you may have no side effects at all. You won’t know until you try it. I think you do need to see a specialist like a hematologist/oncologist.
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4 ReactionsMy gut didn't like HU the first year, but finally adjusted.
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2 ReactionsWhen I was first diagnosed with ET (4 years ago) the medical staff advised I not take HU because it was "nasty stuff." Having spent these years reading about the nastiness. I have stable platelet counts of about 650, no clots and feeling well, so I've not taken HU. NOW my oncologist/hematologist want me to start on HU. Why? I'll continue NOT taking HU unless platelets increase. Maybe I'll get a second opinion and/or try other suggestions I've read about, like cranberry juice. Good luck and don't let stress worsen your health.
The only side effect I've had to deal with, was avoiding sunshine. It apparently makes you more vulnerable, I've notice more "freckles" on my hands exposed to sun. The first year my gut wasn't happy, had very soft BM, but it's finally adjusted. Of course I take HU because I'm more afraid of a stroke or heart attack.
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4 Reactions@donnadarling I've been talking it for about 2 weeks at bedtime. So far, so good
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3 ReactionsGood for you! Hope "good" continues!
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