User Reviews for Hydroxyurea to treat Thrombocythemia
Brand names: Hydrea, Droxia, Siklos
Hydroxyurea has an average rating of 5.2 out of 10 from a total of 10 reviews for the off-label treatment of Thrombocythemia. 30% of reviewers reported a positive experience, while 40% reported a negative experience.
Reviews for Hydroxyurea
"I am 80 years and have been taking this drug for 7 years without problems, it kept my platelets around 600,000. Then I developed open sores on my fingers. A blister would form, pop, and then the sore would be exposed and wouldn't heal for weeks. After that I developed wounds on my ankles. I developed 3 open, non-healing ulcers on my ankles that were so painful I had to go to the hospital. All the while my hematologist, my primary doctor and all the hospital doctors shook their heads and said they didn't know what was wrong. Then my son did a google search and found that these horrible skin ulcers and sores were a rare side effect of the hydroxyurea! I am now off the drug and with a new hematologist and a new drug Jakafi."
Hydrea (hydroxyurea) "I am on Hydrea due to Ediopathic Thrombocytopenia with platelet counts over 2 milion. I am very young (21) and taking Hydrea for 1 year and a half now. Though it has sinked my platelets I have recurrent anemia and infections (most recently in the lungs). In the beginning I was very tired, legs shook, skin would easily bruise, drugged up feeling from time to time, depressive, muscle pain, burning in legs which was severe and decreased after 5 months, brain fog, stomach pain (still common). Most common symptom would be enlarged spleen with pain. I've had brutal neurological side effects that have been decreasing slowly with time. Nevertheless, Hydrea compared to Anagrelid and Interferon is by far the medicine I tolerate better. "
"I am taking Hydroxyurea for thrombocythemia. My platelet count was 1,200,000. After one month on 500 mg a day my count has not dropped at all. I have experienced terrible constipation. My last bout I took laxatives, then used a suppository, then had an Enron’s. Finally I drank a bottle of magnesium citrate and finally I had some relief. It doesn’t help they my doctors office never called me back after I left a message that I hadn’t had s bowel movement in almost a week. I was miserable. Since we don’t foresee a time when I can stop hydroxyurea I don’t know how I will cope with the constipation. I eat plenty of fruits and vegetables. I only drink water. I exercise. But still plagued by this. I also have very swollen feet."
"I was diagnosed with ET in 2016. I was on Hydroyuxrea 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 taking 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 been off for 9 days now. I can't wait for these side effects to go away!"
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"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 approx 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 next few weeks. Blood test due in 2 weeks and see Specialist in December."
"Hi, Female age 40, essential thrombocythaemia (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 first check and due back next week. Generally I feel extremely tired, brain fog, differently concerning and verbalising, 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."
"I take this for mylodysplastic/myleoproliferative neoplasm. I got a lot of nausea. Some weight gain. Overall achy feeling. It has been working like it should. Only had to do one up change on dosage. I take 1 capsule twice a day."
"Not all generics are the same. Did well for three years and stabilized my platelet count until my insurance company changed the manufacturer. All of a sudden my platelet count increased and all my pretreatment symptoms began to appear. Started the non generic brand and am finally back to normal with a stable platelet count. Wish my insurance had not changed the manufacturer as now it costs me $100, a month for my prescription. My insurance does not cover the non generic."
"My husband has been on Hydroxyurea for 6 years. A year ago he developed leg ulcers and a rash. It took months to heal. The Hydroxyurea also has caused his blood readings (WBC, RBC, etc.) to be out of normal range. He has secondary thrombocytosis caused by having to have his spleen removed from a motorcycle wreck. Two months ago he developed the leg ulcers and a rash over most of his body. One of his legs is swollen. Our primary doctor thinks its the hydroxyurea. His hematologist last year didn't think it was the hydroxyurea. She took him off the med a week ago and he is already doing better."
"Medicine takes platelets down but when pharmacy changed manufacturers my skin itches very badly. I will try to go back to old pharmacy"
Reviews may be edited to correct grammar/spelling or to remove inappropriate language and content. Reviews that appear to be created by parties with a vested interest are not published. This information is not intended to endorse any particular medication. While these reviews may be helpful, they are not a substitute for the expertise, knowledge, and judgement of healthcare professionals.
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Hydrea, Droxia, Siklos, Mylocel
"Started on 500mg hydroxyurea and got swollen tongue but not anaphylaxis. Asked to try different brand. I responded well to Droxia brand of hydroxyurea and take multiple 200 m.g. to avoid dyes found in other doses and brands. Brought platelets to near 450 (450,000)."