← Return to Essential Thrombocythemia: Making treatment decisions

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@janemc

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!

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

Thank you for input! Well appreciated.

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.