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

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.

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.

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.

Patients have the mutation many years before it affects blood levels. Researchers seem to think it's unlikely that the mutation is passed via transfusion. That said, MPN patients are not supposed to give blood or donate organs, I presume because "unlikely" is not the same as "impossible."

I’ve been on HU for 7 months after being diagnosed with essential thrombocytopenia. Platelet count approached 1000 after open heart surgery. Docs thought it might be a “reactive” response to the surgery. Follow-up tests revealed JAK-2 mutation. Never had a blood (platelet) value issue prior to surgery.
My feeling is I acquired JAK-2 through blood transfusions received during bypass surgery. My hematologist doesn’t think so but didn’t say it was not possible. Anyhow, no side effects from HU except for late day fatigue.

Welcome new members @mocat47 and @juelie

@mocat47, I can understand the reluctance to taking a cytoxic agent. Your story demonstrates how not everyone experiences side effects. What a relief that an adjustment to the dosage of hydroxyurea is working for you. Yes, better than suffering a stroke.

@juelie, you might be interested in these related discussions:
- Hair loss with ET and on hydroxyurea https://connect.mayoclinic.org/discussion/hair-loss-5/
- People living with ET and taking Hydrea: Anybody setting records https://connect.mayoclinic.org/discussion/anybody-setting-records/

I was very much against it, however I didn't want to be that girl who wouldn't give it a go. It is the first line
of defense. Everything following is stronger and worse. It's been on the market 50 years. My symptoms are
manageable. Little stomach issue now and then, diarrhea but all is well. I have one been on it for about 3
weeks. I take the 500s but only every other day. That's a good way to start. Good Luck to you and best
wishes.

Yes, if you have to take it, you have to. Just that sometimes dosages can be lowered, but docs don't suggest it if you don't seem too upset. If you say, "I want to be compliant, but this symptom is really getting me down ..." sometimes they'll take a second look.

I'd rather deal with HU than deal with stroke or heart attack......those sound scary to me......everyone has their own risk tolerance.......all the best....

He tomado una dosis más alta aún hasta que por fin mis plaquetas llegaron a 500 y mi hematologo quiere mantener ahora esta dosis para que no suban.
Realmente preferiría tomar una dosis más baja aunque las plaquetas estén más altas ya que he empezado muy joven y me preocupan los efectos secundarios a largo plazo..