How long you can live taking Hydrea (Hydroxyurea)?

As long as you are not experiencing serious side effects and the HU is lowering/controlling your platelet count, you can take it indefinitely. I'm sure others will chime in soon and you'll see that we all have different experiences with this drug. I was diagnosed in October, 2023 at age 67. Platelet count was 792 and I started on 500 mg of HU 2 times a day, 7 days a week. As my platelet count dropped my dose was reduced and I have been on 500 mg 2x a day, 4 days a week for about the last year. My platelets hover around 200 and my heme/onc is happy (as am I). My only side effect was I initially had sharp, sudden and very brief headaches, which subsided as my body adapted and as my dosage was reduced. I also experienced some hair loss but that has also subsided. Good luck to you on this journey!

Hello, stacerb1! ET diagnosis is a shock. Remember that every low-dose aspirin and every capsule of HU is helping you.

Others on this forum have taken HU for 15 or more years. As debhammel has said, HU works well to lowers our platelet counts. And when the counts go down, we get some relief from the exhaustion and headaches that are part of ET.

What dose have you been started on?

You must have a million questions. To find more ET conversations, just type "ET" in the search bar at the top of this page.

My hematologist said people can live a normal life span with ET and taking HU. People get various side effects, such as HU causes some muscle pain for me, and a little bit of digestive stuff. It was causing my hair to fall out by the handful, but that stopped when I started taking essential amino acids for something else. Within a couple of weeks my hair was no longer falling out and was growing back in. I found out that certain amino acids can help with hair growth. I use Doublewood brand, Essential Amino Acids, taking 1 capsule 6 days a week.

@debhammel Thank you so much for your response and your experience with Hydrea. I’m so grateful to have found this forum. Wishing you good health and high spirits!

@janemc I was just diagnosed this month, I am taking low does aspirin & 500mg of Hydrea every day. So far I’m not too symptomatic, just random headaches and tingly feet. Thank you for your response. All the best to you Jane on your journey!

@didyolsn Thank you for the information, and the good news about your hair regrowth. So appreciated. I just ordered the Doublewood Essential Amino Acids. Here’s to your continued good health! Cheers!

I am ET JAK2+ and 79 years old. I too have experienced the sharp, sudden headaches. The first one lasted for hours and since then have subsided to perhaps 5 or 10 minutes and sometimes not at all. They begin within about an hour from taking the HU and are very clearly not from any other cause - the timing is predicable. They do not keep me from any planned activity. I take 500mg a day M-W-F. My platelets have decreased steadily from 647 to 387 inside of 3 months. And my doctor has also made it clear, at least with what they know right now, the HU is for life.

Thanks for talking about the headaches. Not something I have experienced, but the way individuals respond to HU seems to be so idiosyncratic the more I learn from others on here.

I was having a lot of muscle aches last week. Age or ET or HU? I don't know. But I'd let the yoga slide in the run up to Easter. Yesterday I got back into my routine, and pains were gone, energy back up.

It's really true that even small amounts of exercise can have a big impact on how we feel. I so important if you're like me and your idea of a good time is sitting in yr chair reading a book or watching Bette Davis matinees!

You and I have the same idea of a good time! I’d rather read a cereal box or watch TCM than exercise! But, my minimal exercise was walking my dog and I just can’t do that anymore so the recumbent elliptical and the stretches and movements the PT showed me keep me moving. And, you’re right, when I slack off I feel it. Isn’t it hateful?
I’ve never had many headaches ever, and thats not changed.
Fatigue and leg pain are at the top of my list of HU and/or PV symptoms. But, everything else I have a tendency to blame on aging which has no good alternative or “cure”.

The Weather Channel is a great time-waster. "I'll go stretch as soon as they show me that footage of giant hail and I get the hourly round-up on weather someplace that I have never been and oops, here's a dog rescue I need to see."