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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@stickball1

Perhaps so. It appears to be too coincidental that my platelet count went out of control almost immediately after surgery. Two routine blood tests taken about 2 to 4 months prior to surgery were normal. 4 blood tests taken the day of surgery and 4 blood tests taken one to two days post surgery were normal.
Six days post surgery, my platelet count was 652 and kept increasing from that point on. Unlikely? Impossible? How about highly probable!!
I can’t be the only person out there that has exhibited this problem as a post surgical event.
JAK-2 is not rested for in donated blood because of its rarity. Draw your own conclusions.

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Most of us won't ever learn the cause of our ET. For me, the platelet count started going up after months of immense stress and physical exhaustion, as I provided care to a friend stricken with ALS. Was that enough trauma to jumpstart my MPL mutation?

Others feel their work with toxic chemicals, or military service around burn pits, may have been the trigger.

And some have a family legacy of MPNs.

Lots of questions, not many answers.

Let's keep telling our stories so that someone, sometime will unravel the mystery of MPNs.

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I have been taking Hydrea for almost 5 years. 500 mg/day and 1000 mg/day Monday thru Thursday. I have CEL.
This dosage has been pretty effective in controlling my eosinophils. I have not experienced any serious or strange side effects from this medication. Except for bruising. Everybody asks me what have you done to your arms. Otherwise Hydrea hasn't been much of a [problem.

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