Essential thrombocythemia (ET): When to start hydroxyurea (HU)?

@vivoconte It amazes me far reaching this disease can occur. I am glad you connected with Mayo Clinic. There is so much to say about how I felt being on HU for so many years. Some days I would look at the medication as a end to a life, but then as time went on and I was doing well with what seemed to be no symptoms, I accepted that it was actually a life saver for me. It is new to me now that I am NOT taking HU. I am sensing less fatigue all of a sudden, and better sleep, and I seem to be thinking better. The question now is - was I not myself while taking HU? Or is this a placebo effect of not taking it? Besremi is given by injection once every 2 weeks. It is odd to me - to not take something every day that depletes my bone marrow. How will this make me feel? Will it really work? The side effects always sound so much worse. They send you a box of loperamide (antidiarrheal) with your first dose. :Q I have not had that problem and its been only 3 days. I have not felt any side effects, but the first dose is very low only 50mcg. The treatment is actually much higher 200 or 300 mcg every two weeks. They start you out slower. I will see how I feel in a couple months. Most common side effects are Flu like symptoms, tiredness, weakness, fever, chills, muscle aches and joint pain, itching and sore throat. Less likely but more serious side effects exist. I would do a search on this so you are fully aware. For me, I just want to know if this will extend my life, longer than being on the HU. I've been lucky I guess, and feel like I have had my time on earth, so I don't have anything to lose at this point. Love and health to you my friend.
leene

@leene808 que dura se hace a veces la fatiga! Y la niebla mental, a veces siento que soy "más lenta" en cuanto al razonamiento. Yo tomo 2 comprimidos 6 días a la semana y 3 comprimidos el día restante. Siento que es demasiado, lucho cada día con el hecho de tener que medicarme..
Abrazo grande y gracias por tus palabras.

I am 73 years old, diagnosed with Polycythemia Vera last August. Hdroxyurea treatment started with 500mg per day, then went to 1000mg, and currently at 2000mg per day. I go in this Wednesday for blood work. I'm praying that my hematocrit level is below 45. Then maybe the doctor will reduce the Hdroxyurea.
I have always shook the pills into the cap, had water ready, tipped the pills into my mouth was washed them down with water.
My understanding about the Hdroxyurea is that it is more important that no one but you handles the medication.
I have never questioned taking this med. It has been proven to work.
They also tried unsuccessfully, to do phlebotomies in both arms a few weeks back. The blood would start, but was just too thick to continue.
The only side effect I have noticed is fatigue. Which is part of the disease, but I also think from the high dose of Hdroxyurea.

Hi all: I'm one month into taking Hydrea 500k mg for thrombocythemia. It was very hard to take the first tab, but getting easier. I am careful with the tabs and will start taking them with a full mouth of water. I don't touch them but take one tab from the cap of the med container.

So far I have no side effects - humble and grateful. But my platelet count has come from 805k down to 557k and I am trying to not have to take more Hydrea, assuming taking more increases my chances for side effects. I am trying visualization to help my med be even more effective.

I love and often copy all the comments I find in this chat group. Many thanks.

@diannerk
HOORAY for that wonderful drop in your platelet count!

Keep up the good work!

@diannerk In 1992 or 93 I was diagnosed with ET. My platelets were 1.5 million and no side effects from disease. Hydrea was able to get them down to 400k. Another drug came on the market Agrylin, which the doctor thought might be a safer drug. Took it for a few years. Dr was retiring and told him since my blood counts were normal that I was not going to take any more meds. This was before high platelets were classified as cancer! They called it a blood disorder. For at least 20 years, my platelets remained normal until Jun 2025 when I was diagnosed with MF. Hopefully, you’ll do well with this drug since it’s been on the market for years. Wishing you well.

I am 71 and taking a daily aspirin and 500 mg of Hydroxyurea. I have been taking the latter med since the end of August. My platelets have dropped from 548 to 335 over the last two months .
I have had no side effects. I am older than you which creates a higher risk for stroke or heart attack, so based on how I feel and no side effects, I will continue on this path. I see the doctor early January.
I continue to go for long walks daily and eat healthy and hydrate.
I prayed about it and feel at peace with my decision, but it is a personal one. Praying you will find the right course for you!

@jbcl do you have MF or ET? I’d gladly go back on Hydroxyurea, but have you beat on birthdays 🎉. I’ll be 76 in a few weeks!😊. I’m active and do Pilates 3 days a week and walk everyday. And most importantly am praying. God is in control!

Good for you staying so active!!
I have ET.
And you are do right....a God is in control and has you in His precious hands!

@jbcl I am also 71 and just started Hydroxyurea 500mg early last week. Tomorrow I will have my first CBC to check for effects. It would be wonderful if I had the same results as you.
I look forward to long walks in the spring as I broke my ankle and hip in March and the surgeon told me it would be a one year recovery. I'm holding him to that!!