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Long term medication Hydroxyurea
Hello
I was recently diagnosed with the JAK 2 mutation. My hematologist prescribed 500 mg of Hydroxyurea 2 times a day.
I just started taking it 6 days ago. So far I haven’t had any side effects, maybe stomach upset but I also have diverticulitis so it’s hard to tell.
I’m really grateful for this support group. So many of my questions have been answered by reading through the posts.
Most of all it’s nice to find others who know what’s going on, none of my family & friends understand this.
Thank you
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By sharing our experiences, we ETrs become our own research team into this mysterious malady.
I always take HU after eating . . . what works for you, lindy25?
What's more fun than blood cancer? DIY blood cancer!
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5 ReactionsI was diagnosed with ET and the JAK2 mutation almost 3 years ago and have been taking HU ever since. The only side effect I had was very brief (30 seconds), intense headaches when going quickly from sitting to standing. That subsided after about a week and since then I have had zero side effects - and my platelets dropped from 792 to right around 200. I take 500 mg 2x a day, Mondays through Thursdays, and always take it with a meal.
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4 Reactions@janemc
I have just been taking it twice a day, about 10-12 hours apart, usually at 9am and 9pm, I am still having trouble getting into the habit of taking meds twice a day so sometimes I do forget at night and end up taking it much later.
It does feel like it's DIY!
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2 Reactions@lindy25
I put my HU in a weekly pill dispenser or I would forget to take it!
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3 ReactionsI take 500 mg a day and my side effects are extreme tiredness, dry mouth and dry scalp. I tried cutting it down to every other day and my count went back up to 700. Anyone else having these symptoms?
I am 82 and was diagnosed with ET JAK2 in 2022. I started with 500 mg daily of Hydroxyurea. I had headaches and was lightheaded. I was switched to every other day which helped. I currently take it four days a week. I am on a blood thinner for AFib so I cannot take aspirin or anything other than Tylenol. I have hypothyroidism.
My problem is daily headaches and my arthritis has gotten much worse. My hematologist told me to stop taking HU for a few weeks to see if headaches continue. They are continuing daily. She mentioned a possible medication change. I researched Pegasys and Besremi, They also have many side effects. So I am very hesitant.
Best wishes, Eileen
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3 ReactionsInteresting my doctor told me to take 2 HU caps once a day.....not twice? Seems everyone gets different instructions. Also the thought of swallowing toxic pills, I take a few spoonfuls of yogurt or a piece of cheese (my reward)
I did not know anything about the pills being toxic until I did my own research:(
This seems to be different for each person.
Sorry to hear about your headaches.
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@debhammel WOW THATS A LOT OF HU !
DWHEN YOUR PLATELETS DROP DOWN TO 200 !!
DID YOU DISCUSS WITH YOUR DOCTOR ABOUT DROPPING THE AMOUNT OF HU YOU ARE TAKING ? YOU DO NOT MENTION YOUR OTHER BLOOD NUMBERS ? HAS HU AFFECTED THEM ?? ANYWAY I JUST WANTED TO BRING UP CCOUPLE OF THINGS TO THINK ABOUT! GOOD LUCK 😉
@hanya I went from taking HU 7 days a week to just 4 days.