Hydroxyurea and Headaches: What Users Say

• Liz...
• Taken for 1 to 6 months
• October 20, 2016

For Thrombocythemia "Bad side effects (or what I would consider bad side effects and not to be tolerated) - 71-year-old female, 58 kgs: been taking 500 mg a day for approximately 2 and a half months. Recently experienced fever, chills, headaches, muscle aches, extreme tiredness, lack of appetite - enough that I could not function and spent days in bed. Waited 5 days, took another dose, and was back in the same position the next day. Decided to stop medication for the next few weeks. Blood test due in 2 weeks and see specialist in December."

• Kat...
• Taken for 1 to 6 months
• July 21, 2021

For Polycythemia Vera "I have taken hydroxyurea for my Polycythemia Vera condition for approximately six months. Though this medication has effectively controlled my red, white, and platelet counts, I have constant sores in my mouth and found through an upper GI endoscopy that I also have them in my throat and throughout my upper GI area. I have had consistent headaches and dizziness since beginning this medication. My hematologist refuses to acknowledge that any of this could be caused by this medication. Since I was only diagnosed with Polycythemia Vera six months ago, I have no idea where to go from here."

• T40...
• Taken for less than 1 month
• June 14, 2019

For Thrombocythemia "Female, age 40, essential thrombocythemia (ET) diagnosis for over 11 years. Was on hydroxyurea about 8 years ago and wasn’t feeling anywhere near as poorly as now, on one tablet a day for the last two weeks. Platelets before I started were about 1100. Platelets went down a bit after the first check and due back next week. Generally, I feel extremely tired, brain fog, difficulty concerning and verbalizing, not eating much but gaining weight. I would be asking to go back on interferon next time I see my consultant. I need to be on treatment as high levels are giving me extreme headaches. I’m from Ireland, so only pay up to €120 p/m for all my prescriptions, the rest is covered by my taxes."

• Anonymous
• Taken for 1 to 6 months
• April 10, 2020

For Thrombocythemia "I was diagnosed with ET in 2016. I was on hydroxyurea for 3 months to bring levels down quickly. All while on the meds, I felt horrible. I had headaches, dizziness, shortness of breath, tingling in hands and feet, shortness of breath, you name a side effect, I had it! I was taken off these meds and was placed on anagrelide, and it worked wonders. No more side effects. Here we are 4 years later, and I had a spike in my levels and had to go back on hydroxyurea, and I'm back feeling like rubbish again. I was only on it for 30 days, and it had major effects on my body. I've been off for 9 days now. I can't wait for these side effects to go away!"