Essential Thrombocythemia: Looking for information and support

Hi, I am new to this support group. I am 68yo. Diagnosed with ET 20 yrs ago. I have been on HU for about 10 years. Triple negative for mutations. On aspirin for about 15 years. My platelets run 2 million if I go off HU. When I take HU they run between 500,000-900,000. I take 1500 mg HU daily. If I increase the HU my wbc and other labs go too low. It is a difficult balance. I am supposed to have rotator cuff surgery but I am really nervous because I do not want to go off the aspirin. I am afraid of clots/thrombosis/stroke. Anyone have experience or advise ?

Yes I did and it came back positive. for Jak 2 mutation.

Hydrea is a chemotherapy.

Marylynda, have you been tested for temporal arteritis? I had it about ten years ago,and presented with some of the same symptoms you described.

I am 82 and was diagnosed with ET six months ago. At first, the oncologist put me on a low dose aspirin daily.
My platelet count was up to 609 so she put my hydroxyurea. 500 mg daily. I freaked out when I saw the label on the medicine bottle that said you had to wear plastic gloves when handling both the bottle and the medicine. Is this drug a form of chemotherapy? No real symptoms except fatigue and high platelet count.

I take it 1/2-3/4 hr before going to bed, with water and maybe few spoonfuls of yogurt, works for me

I was asymptomatic with high platelets for 10 years with no treatment. Just monitored platelet counts. Then had serious pulmonary embolisms. Tested positive for JAK2 and began 500 mg of Hydrea daily. No side effects. However, I have serious permanent damage from the PEs. Do all you can to avoid PEs.

When I started the Hydrea, I also took it at night. But I had the utmost freakish dreams that I just couldn't take!!! lol. I take mine in the morning with toast.

Don't assume your will have side effects from Hydrea. My platelets were 600s for 10 years and hemotologist just watched it. No treatment. Then I ended up in hospital with serious pulmonary embolisms. New hemotologist tested for JAK2 and it was positive. Immediately began 500 mg of Hydrea daily. Now in normal range with no side effects BUT I do have serious condition resulting from the PEs. Do what needs to be done to prevent PEs!!!!!!!!

I was diagnosed with MDS in 2021. In March 2023 my platelets shot up to over a million. My doctor ordered a blood test and I am JAK2 positive. They say it's very rare and weird that this happened.

I started taking 1000 mg of Hydroxyurea daily. I was so so scared to start taking it, but I have had absolutely zero side effects. I am so thankful.

My platelets are very slowly coming down. Was 1179 and now 1063. This is over the course of a month or so.

Just had another bone marrow biopsy and am waiting for results.

Best of luck.

Unless there is a need to get platelets down very fast, hematologists now try to start patients at a low dose and work up. This reduces side effects. I was in 800s and started with 500 mg per day. After a year, platelets had gone to 600s, and another 500mg dose was added 3x per week. I stay in the 400s now, and hemo says that's fine.

That said, we all have different clot risks based on age, smoking, mutation type, etc. So there is no one size fits all dosing strategy.

I do think that somebody in the 500s prescribed 1000 mg right off the bat should certainly ask why they couldn't start with a lower dose and work up as needed.