My diagnosis of ET with Jak2 Mutation came after high platelets, 780K, were found on a CBC at my annual physical. I was referred to a hematologist, not realizing that I was also going to an oncologist too. That was a shock. I had no symptoms other than high platelets. My oncologist recommended 500 mg of hydroxy (HU) 3x a week. I was not ready to start until I did my research. As a result of my reading, month one was 2 baby aspirin and oral iron supplements. In month 2, some improvement in platelets, but we added 500 mg of HU once 1x week and went back to 1 baby aspirin due to bleeding and bruising. Month 3 showed a slight increase in platelets, so we went with 500 mg. of HU, 2x week, one baby aspirin, and one iron supplement daily. I have been on this same regimen for 10 months. All numbers look good and platelets are stable at 500. I did not want aggressive treatment if HU worked. It does give me fatigue, dry skin, dry eyes, and bleeding gums, but all are manageable. Most of the time, I plan my activities for the afternoon due to the fatigue. Fortunately, I am retired and can adjust my schedule as needed. HU reduced immunity. I wear my mask in large groups, shopping, and while out of my house to stay well. So far, it's worked. I am also up to date on all immunizations. I have not had COVID, flu, RSV, or pneumonia. It does help to be careful, but I still see family and friends. Take care!
I have had ET, JAK2 positive, for 12 years. Received no treatment until 20 months ago when I had serious pulmonary embolisms and platelets went to 800,000. Now take 500 mg of HU daily and xarelto. Platelets now in low 200,000 with very minimal side effects. I almost waited too late to start treatment.