Essential Thrombocythemia: Making treatment decisions

This forum is a great place to learn from others' experiences. There are several threads discussing HU.

I was scared the first time I heard I needed HU. But now I know others have taken it for decades. This inexpensive drug has been in wide use for more than 50 years, not just for ET but for sickle cell disease too.

Is it perfect? No. It lowers our immune response and makes our skin more vulnerable to sun damage.

And some people have GI or other side effects with HU.

But to me these are all acceptable risks, since HU, by lowering our platelets and making our blood less sludgy, protects us from strokes and cardiac issues.

I have had elevated platelets (500s then 600s then 700s), for a couple of years. My oncologist said I needed to protect my cardiovascular system with not just a low-dose aspirin, but HU as well. He also explained that, unchecked, overproduction of platelets depletes our bone marrow. And he said that bone marrow transplants often don't succeed.

I started taking HU in October. My platelet count has stopped going up, and I'm much less worried about strokes. And my ET fatigue and headaches are easing up.

So I'm grateful my oncologist put me on HU, especially since he started first with 1 500mg capsule a week, then 3 capsules, now 5. That has minimized any side effects for me.

Talk again to your own hematologist to see what's best for you. All good wishes!

I just was diagnosed in early January so have been on Hydroxyurea for ~24 days now. I'm 46 with platelets around ~600 but i had a heart attack 2 years ago so they have me as high-risk. my experience was headaches for the first ~2-3 days with a little bit of nausea (not bad). The headaches went away with some tylenol and then went away (mostly) after the first 3 days.

After that I've settled in a bit but certainly notice muscle fatigue and joint pain more than before. I'm a pretty active person so not sure that is intensifies it. For example pre-Hydrea I lifted weights 3-4 days a week and ran ~30-40 miles a week. I ran 9 miles the other day and have continued my lifting but the best way to describe it is I currently feel 70-80% as strong as a month ago and I feel I need to get more restorative time in the afternoons and then am more "sore" in the morning. I'm told by others on this thread and by doctors that goes away with time on the drug but i haven't reached that point.

Lastly...it's definitely had an impact on my skin. So far it's been bringing out old sunspots on my face (which I've heard is common). Also I am feeling areas of my skin as more sensitive to the sun then before even in ~30-60 seconds in the sun. Not that they are getting burned that quickly but you can just feel the light more intensively. As a result I'm putting essentially full sunblock on my whole body now which is fine and I can live with it but also just something new. To combat this my wife researched that Coconut oil and honey based products are good (someone please tell me if they are not 😉 because I've been now using just a couple different types of creams at night and i'm already noticing the changing skin is stopping or getting back to the way it was.

Beyond that I think the last worth mentioning (at least for me) is the mental side of it. I've personally struggled a bit with the idea that I'll be on a chemo pill the rest of my life and that I may be 70-80% for that time. That may only be me, and likely because this is a new diagnosis for me, but it's probably been the hardest thing for me whether that is a side effect or not. Also something I'll likely get past but honestly it's better than another heart attack or ignoring the problem.

So yeah overall good luck with your decisions. I think you'll find a ton of people on this that forum that have been on Hydroxyurea for a long time. Even 30+ years and are going strong! so on the whole there are some side effects but to they really aren't that bad so far. There is also a good chat within this forum that discusses other alternatives to Hyrdoxyurea which I've personally found interesting.

I’ve had ET for 30 or 40 years and took HU until several years ago with no side effects. I’m 88 now.

This forum is a great place to learn from others' experiences. There are several threads discussing HU.

I was scared the first time I heard I needed HU. But now I know others have taken it for decades. This inexpensive drug has been in wide use for more than 50 years, not just for ET but for sickle cell disease too.

Is it perfect? No. It lowers our immune response and makes our skin more vulnerable to sun damage.

And some people have GI or other side effects with HU.

But to me these are all acceptable risks, since HU, by lowering our platelets and making our blood less sludgy, protects us from strokes and cardiac issues.

I have had elevated platelets (500s then 600s then 700s), for a couple of years. My oncologist said I needed to protect my cardiovascular system with not just a low-dose aspirin, but HU as well. He also explained that, unchecked, overproduction of platelets depletes our bone marrow. And he said that bone marrow transplants often don't succeed.

I started taking HU in October. My platelet count has stopped going up, and I'm much less worried about strokes. And my ET fatigue and headaches are easing up.

So I'm grateful my oncologist put me on HU, especially since he started first with 1 500mg capsule a week, then 3 capsules, now 5. That has minimized any side effects for me.

Talk again to your own hematologist to see what's best for you. All good wishes!

That was a clever way to start HU, I was put on 500 mg daily resulting in daily headaches, lightheadness. I am now taking it 4 days a week.

I started HU once a week for a month, then 2x week for 8 months. This week, I started HU 3x a week. Fatigue and dry skin are my big issues. I have IBS and was worried about stomach issues with HU. I take pre-biotics and probiotics several times per week. I also need iron for low Ferritin. It can be binding, but I eat plenty of fruit and take it with OJ. I've been taking one baby aspirin per day for over 30 years, due to "sticky" blood. In 2023, high platelets resulted in tested that gave me the ET/Jak2 diagnosis. So far, I feel this illness is manageable, but it was very scary at first to learn I needed oral chemo.
Take care!
Karla