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@nohrt4me

Probably doesn't matter how I made my decision. Everyone has different ideas, fears, and circumstances.

If you are afraid of HU, it is helpful to tell your hemo EXACTLY why you don't want to take it. If you give some vague answer like, "I just don't like taking pills," or "I want to treat myself as naturally as possible," you will get set down as uncooperative and that won't help your doc-patient relationship. Not fair, but that's health care in America. My husband, who had a heart attack, has been balky with his cardiologists about taking pills, and they now think he's a nutbar.

Side effects of HU include gastric upsets, increased risk for skin cancers, leg ulcers (if you're on it for more than 20 years), mouth sores, hair thinning, skin and nail changes.

The fact is that your ET is not going to get better with diet and exercise (though doctors need to wake up and realize that these things really help!) and that platelet count really doesn't affect your clot risks. Patients can get massive clotting events even if their counts are in the 500s. Once platelets approach 1,000, you run the risk of Acquired Von Willebrands. Your clot risk is more dependent on type of mutation (JAK2 patients have the highest risk), age (if you're over 60), and whether you've had a previous clotting event. (You can look up something called the IPSET score, which is what docs use when they make the determination to recommend HU treatment. https://thehematologist.org/ipset-thrombosis/ )

Second opinions are always good!

So is asking your doctor if you are a good candidate for Pegasys (interferon), an alternate to HU that actually may retard progress of the ET, but is frightfully expensive, which might be why docs don't recommend it more.

It might be a better strategy to take a low-dose of HU now than to let them go sky high and have to take mega doses to reduce your platelets. My dad also had ET, didn't know it, and was hit with big doses of HU when his platelets went way over 1,000. He had bleeding episodes with that, and it was not fun.

I've been on HU for four years, 500 mg every day maintenance dose. I am doing OK.

I know this is all scary at first. After a few years, it gradually becomes more annoying than anything else. Most people live a normal lifespan and die of something else if they are treated properly.

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Replies to "Probably doesn't matter how I made my decision. Everyone has different ideas, fears, and circumstances. If..."

Thank you. I appreciate your feedback. I truly do not want to interfere with the patient/doc relationship. I get that. I have told him of my fears ( side effects and long-term use as I am 57 and looking to live as long as possible). I will be taking it somewhat soon, just needed to get through a bit more research and preparedness.

Thanks again, super helpful feedback.

I'm a 53 yo active female. Platelets were 2,900 (crazy high) so ET/CALR and yes, AVWD also. Clots aren't my issue so no baby aspirin. Extremely high risk of bleeding. Asked not to do anything too risk taking 🙁 I take 1500 mg of HU and 1 mg of Anagralide both daily. Don't have much of a choice with the numbers I have. Platelets are now under 1,000 (on meds). Biggest drawbacks/side effects I feel of the meds are GI issues, fatigue, tingly feet and funky nails (??? weak, splitting and spooning). Blood panels bi weekly for foreseeable future or until meds are figured out. Numbers need to be low, consistent and working properly (AVWD). My husband and kids keep me positive. I always tell myself ...it could be a lot worse. Stay strong everyone!!!