Hydroxyurea for Thrombocythemia User Reviews

• Nic...
• May 1, 2017

"I am 80 years old 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."

• Mer...
• January 4, 2012

Hydroxyurea "I am on Hydrea due to Idiopathic Thrombocytopenia with platelet counts over 2 million. I am very young (21) and have been taking Hydrea for 1 year and a half now. Though it has lowered my platelets, I have recurrent anemia and infections (most recently in the lungs). In the beginning, I was very tired, had shaky legs, skin would easily bruise, felt drugged up from time to time, experienced depression, muscle pain, burning sensation in legs which was severe and decreased after 5 months, brain fog, and stomach pain (still common). The most common symptom would be an enlarged spleen with pain. I've had severe neurological side effects that have been gradually decreasing with time. Nevertheless, Hydrea, compared to Anagrelide and Interferon, is by far the medication I tolerate the best."

• Liz...
• Taken for 1 to 6 months
• June 19, 2019

"Started on 500 mg hydroxyurea and got a swollen tongue but not anaphylaxis. Asked to try a different brand. I responded well to the Droxia brand of hydroxyurea and take multiple 200 mg to avoid dyes found in other doses and brands. Brought platelets to near 450 (450,000)."

• Nan...
• Taken for 1 to 6 months
• September 14, 2019

"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 enema. Finally, I drank a bottle of magnesium citrate, and finally, I had some relief. It doesn’t help that my doctor's office never called me back after I left a message that I hadn’t had a 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 I am still plagued by this. I also have very swollen feet."

• Anonymous
• Taken for 10 years or more
• January 7, 2025

"Hydrea 500 mg x 6 days per week keeps my platelets in the range of 150-400. I have taken these drugs for over 30 plus years. I am now 68 years old. Apart from feeling a little tired at 4 pm each day (now I am older), it’s nothing a short nap can’t remedy. My lifestyle is full, I am a mother of three grown sons and a grandmother of four. I swim and hike and lead an active life. I have no impairment with using this drug for a long time. I do take 75 mg of enteric-coated aspirin per day also. I am very grateful for this drug."

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

"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."

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

"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

"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!"

• dal...
• November 23, 2015

"I take this for myelodysplastic/myeloproliferative 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."

• Ser...
• Taken for 5 to 10 years
• August 8, 2024

"Male, 49, NZ. The HU 1000 mg a day was prescribed after the high 1200 platelet count was discovered during an occupational blood test. I was 43 and just entered commercial construction a few months before to make a living. I cannot say much about the side effects at the beginning as I was very tired and my body was aching after work. At least it didn't get worse. The most prominent thing was a tingling sensation in my toes, but I guess many healthy people will have this after a long day on their feet in safety boots loaded with a toolbelt. The good thing was that I was taking a bunch of supplements to sustain the pressure of the hard work. I guess it helps me to resist some adverse effects of the chemo. A couple of years ago, the medication brand was changed to Hydrea. I don't remember the initial one, but there was no change in side effects except the burning sensation in my urinary tract when taking ibuprofen with HU and not taking extra water. Now 1500 mg a day and 300-500 platelet count."

• Jkd...
• Taken for 2 to 5 years
• May 9, 2021

"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."

• Pea...
• Taken for 5 to 10 years
• July 24, 2022

"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 it's 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."

• psh...
• Taken for 10 years or more
• February 13, 2025

"I was diagnosed with ET in 1993 as a 29-year-old man. I have taken 1000 mg/day every day since. Platelets went from 1.2 million to about 650,000. I am 60 now and am still around 550,000. I don't have any major illnesses, other than hypothyroid, high blood pressure, and high cholesterol. I think I may be the longest living patient on Hydrea at 31 years. I don't really know of any side effects because I have been on this for so long. I have to assume that this drug has in fact extended my life. I'll keep taking Hydrea as long as my oncologist/hematologist keeps telling me to take it. It is really difficult to rate this medication, but I am still here."

• kp2...
• Taken for 1 to 2 years
• May 3, 2017

"Medicine takes platelets down, but when pharmacy changed manufacturers, my skin itches very badly. I will try to go back to the old pharmacy."

• gre...
• Taken for 6 months to 1 year
• May 15, 2023

"Worked well to control platelet count. Caused muscle soreness, hair loss, joint pain, increased depression, exhaustion, and possibly 'chemo brain.'"