Essential Thrombocythemia (ET) is one of a group of blood disorders called myeloproliferative neoplasms. Other types of myeloproliferative neoplasms include primary myelofibrosis and polycythemia vera. Genetic mutations in essential thrombocythemia lead to extremely high platelet counts (thrombocytosis). Many people are without symptoms at the time of diagnosis and will have a normal life expectancy. Complications include clot formation (leading to stroke, heart attack, a clot in lungs, or deep vein thrombosis), development of myelofibrosis, or transformation to acute myeloid leukemia (AML). One unusual complication of essential thrombocythemia is the development of acquired von Willebrand Disease, a bleeding disorder. If you are diagnosed with essential thrombocythemia the natural next question is, "what are my treatment options? Hydrea (hydroxyurea) is the go-to drug used with ET if platelet counts go too high, and many patients fear it because it usually comes with some side effects AND because it may be linked to an increased risk for developing leukemia, though research isn't conclusive. But a Web site called Ask a Patient collects comments from patients themselves about how they've responded to various drugs, including Hydrea, and I'm sharing what I got from that site in this post. To put info together, I looked only at ET patients (not those with other MPNs or sickle cell anemia), since people with other diseases might respond differently to Hydrea. I also looked only at patients who have been taking Hydrea for more than three months, about the time it takes for the drug to work and for side effects to settle down. And here are a bunch of qualifiers, caveats, and blah blah to think about. Second is that Hydrea doesn't affect everybody the same way or with the same intensity; length of time on the drug and dosage may make a difference. (Ladies, once we get to a Certain Age, waking up one morning to find you suddenly look like your mother's older sister is not that uncommon now, is it? First is that some of the side effects that patients reported are actually symptoms of ET, such as dizziness and fatigue. Third, women on Hydrea outnumbered men by about five to one, and most people were middle-aged (between age 40 and 67). ) So, all that said, here's what I found out: On a scale of 1-5 (five being most effective and helpful), patients gave Hydrea a score of about 3.7. That means that, for most people, Hydrea is pretty effective and its side effects manageable. Most common side effects on Ask a Patient for ET patients: Fatigue. About 30 percent of patients reported a variety of skin problems, most commonly itchy or dry/flaking skin, sagging/aging of the skin, or redness or other discoloration of the skin around hands and ankles. Hair loss (about 30 percent of patients) was usually reported as slight, though one or two patients reported some patchy baldness. Most digestive upsets seemed to go away after patients got used to the Hydrea.
Summary Essential thrombocythemia, also known as ET, is a rare disease. The most important first fact about ET: on average, people with ET have a normal life expectancy. Patients with ET have increased numbers of platelets. Platelets are the smallest of the three types of blood cells and are needed for successful blood clotting after an injury. The two other types of blood cells are red blood cells, which carry oxygen to all tissues in the body, and white blood cells, which help to fight infections. Red blood cell numbers (often measured as a percentage of whole blood, called a hematocrit) are generally normal in ET, while white blood cell numbers are normal or slightly elevated in ET. Importantly, most people with an elevated platelet count do not have ET. As my platelet count climbed over and up from 700 I got my diagnosis of ET. Went to Standford for bone marrow test and found Jak2 positive. My question is: Has anyone had Hydrea reduce platelet count, as I have (338), and then stopped taking it? I wondering if, and how long it would take, the count to climb back over 750?
In essential thrombocythemia, drugs such as hydroxyurea or anagrelide are used to suppress platelet production by the bone marrow. These drugs usually have. Hydroxyurea Hydrea, Droxia, Mylocel chemotherapy side effects, how it's given, how it works. In other words, high doses may produce more severe side effects. Your white and red blood cells and platelets may temporarily decrease.