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

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Does anyone else have any experience with higher doses of HU? I am on 1500 daily and have hair shedding, nausea, headaches and fatigue. My white cells are so low I am living like it is the pandemic. I am 55 diagnosed in November 24 and started HU in June. My platelets are only slowly decreasing and now at 600. I am hoping to hear my dosage will be going down sooner than later.

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Replies to "Does anyone else have any experience with higher doses of HU? I am on 1500 daily..."

Yes, some docs start patients on huge doses of HU if their platelets are over 1,000 and they are at higher clot risk due to age (over 60), if you've had a clot, and driver mutation (JAK2 = more clot proclivity).

Most docs now are starting with low doses and moving up as needed. Gives patients time to adjust to the med.

Imo, it would not be at all out of line to call the doc and ask if you can reduce your dose gradually to alleviate symptoms or to seek a second opinion. The treatment for chronic illness should should not be worse than the disease.

But ET is diff for everyone. I'd be interested in knowing more about yr doc's dosing strategy.

Wow seems like a really high dose to start. I was on HU for over 5 years, started out at 500 mg 3X/wk. Over time platelets would creep up, so upped the dose until 2000 mg 3 days a week and 1500 the other 4. Never had issues until all off a sudden all parameters cratered (plt, rbc, wbc) now on Jakafi 10 mg 2X / d.

As you can see from the posts, very few have the same journey, so monitor yourself and trust your doc (second opinions are also highly recommended especially if not an MPN specialist), I've been lucky to have always had a great doc - only switched to one in an R&D institution to have opportunities to participate in clinical trials.
Best of luck.