After asymptomatic high platelets in the 600 range, a bone marrow biopsy revealed JAK2 and I took Hydrea 500mg daily. I immediately experienced throbbing headaches, including four migraines, and developed debilitating fatigue and lethargy. After three months, my platelets had dropped into the 400 range but I needed more energy to train for an upcoming wilderness backpacking trip. Because I am at low risk other than age--71--for clots, my hematologist OK'd stopping hydrea unless platelets approached 1000.
I felt better soon after discontinuing Hydrea, with more energy, less brain fog, and fewer headaches, and had a fabulous week in the wilderness. At recheck last week, after two months off Hydrea, platelets were 628 and all other CBC and blood chemistry values were normal. The hematologist suggested trying 500mg Hydrea 3 days weekly which I'm considering with much concern based on the side effects I already experienced and others listed for this drug. I'm also considering getting a second opinion and asking about other treatment options.
Each of us must come weigh our own conditions, risks, and considerations about quality of life when deciding which treatment is right for us. Best of luck in finding the best care and treatment for your blood disorder!
I am currently taking 500 mg Hydroxyurea on Monday/Wednesday/Friday. Headaches are less. I have ET JAK2. It is worth a try.
Eileen