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

@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.

My gut didn't like HU the first year, but finally adjusted.

When 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.

@donnadarling I've been talking it for about 2 weeks at bedtime. So far, so good

Good for you! Hope "good" continues!

I'm taking Hydrea 500mg since February 14th of this year. My platelet count diminished from 1100 to 320 G/L, my red blood cells diminished from 6,56 T/L to 4,57 T/L in May, but this tendency continued in June to reach 3,60 T/L and this means a megaloblastic anemia (my MCV is at 102). I don't know what will succeed. I'll consult with my hematologist mid-July. Is anybody in a similar case? I fear this is a sign of a more serious cancer (leukemia?).
I'm taking also a baby aspirine (75 mg) a day.

@ebertolis

It's natural to worry and dwell on the worst possible outcomes.

Maybe you can balance the times of anxiety by finding something that gives you solace?

It could be something as simple as remembering, you've had great success lowering your platelet count. Every dose of Hydrea has helped your bone marrow -- and that's the best possible defense against progression to leukemia.

As you wait for your mid-July appointment, please do something nice for yourself every single day.

And please let us know how you're doing.

I have been on Hydro for almost 10 months. All of my bloodwork is within range but I experience extreme fatigue, brain fog and shortness of
breath as well as short term memory loss. My legs feel so heavy. I don’t know if it’s the HU or the PV (I am also JAK2 positive), but my life is greatly reduced. They put me on Jakafi briefly but my liver became inflamed so I went back to HU. No phlebotomies for nine months now and no need. Each individual has their own experience but mine is positive for the HU and a big NO. For Jakafi.

@janemc
Thank you for the encouragement!