Hydroxyurea User Reviews & Ratings

• Terri
• July 8, 2009

For Polycythemia Vera "I have had Polycythemia vera for 25 years. I was started on hydroxyurea two months ago and recently developed severe petechial hemorrhaging. I was admitted to the hospital with a platelet count of 9,000. I received a six pack of platelets and over seven days (being off the medication) my platelet count had climbed to 74,000. As of Sunday, July 5th, it was at 139,000 (off the medication for ten days). I was given the medication to help prevent the POTENTIAL of developing a blood clot. I have managed my Polycythemia vera pretty well without medication for 25 years (I do take baby aspirin) and wish I had never taken this."

• Lizzie
• Taken for 1 to 6 months
• June 19, 2019

For Thrombocythemia "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)."

• Nicks...
• May 1, 2017

For Thrombocythemia "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."

• Meredes...
• January 4, 2012

Hydrea (hydroxyurea) for Thrombocythemia "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. "

• Nancy
• Taken for 1 to 6 months
• September 14, 2019

For Thrombocythemia "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."

• Hydre...
• September 20, 2009

"I have been taking varying doses of Hydrea for over 9 years to control Essential Thrombocythemia following a thrombotic event directly related to the ET. At the time of diagnosis, my platelet count was over 1,000,000 however under regular monitoring and occasional dose adjustment, I have been able to maintain a stable and normal ranged platelet count. Side effects have been negligible to date."

• S3DDY
• Taken for 10 years or more
• December 31, 2018

For Sickle Cell Anemia "I have been taking hydrea since 91 and I have pain still but I do drink a gallon of water a day and take my folic acid as directed. I also take zinc. My hospital admission has decreased significantly. Haven't noticed any side effects from it. Plus I pray and attend church regularly so it is a combination of a lot if things"

• Lizwon
• 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 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."

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

For Thrombocythemia "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!"

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

For Thrombocythemia "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."

• Hodie...
• Taken for 1 to 6 months
• May 25, 2021

For Polycythemia Vera "After a few months of taking this medicine I had severe joint paint making it very difficult to walk. At one point all of my joints hurt. I went to the ER once I could make it to the car. They could not find the problem. Next to primary care doctor more blood work. I then saw a rheumatologist who did more blood work - nothing. Then I looked up side effects of the medicine and found that joint pain is a rare side effect. Went back to my oncologist and let her know what I found. She took me off the medicine and within days my joint pain was better. Very upsetting since I had asked already could it be the drug. Three doctors failed to check side effects! Back to phlebotomy."

• smili...
• Taken for 10 years or more
• May 23, 2018

Hydrea (hydroxyurea) for Sickle Cell Anemia "Hello. I have Sickle Cell Disease-SS Hemoglobin. My hematologist started me on Hydrea in 2001 & I'm still on it. I'm in my early 40's & it had helped me. I take 4 capsules 500 mg now, but in 2001, my blood count was extremely low. Once on it, it had increased my red cell count, while my white cell count decreased (which it's suppose to do). I have less amount of hospital admissions now. But I have to admit, even though doctors may think it's like a "cure", it's NOT! I've lately been having small pain crisis in joints that made me go to ER but not admitted about 3 months out of entire year. My RBC & WBC counts are still looking good. You HAVE to keep your doctor appointments & tests while on this medication. I do have extreme nausea & have to skip a day sometimes. This medication may work on one Sickler but NOT on another. Now we have another alternative. I hope my experience will help other Sicklers see pros & cons. But we FINALLY have a choice now!"

• 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 from this medication. Since, I was only diagnosed with Polycythemia Vera six months ago, I have no idea where to go from here."

• Mary...
• Taken for 10 years or more
• January 6, 2024

For Polycythemia Vera "Been taking this for over 12 years. Previously had to give blood weekly to keep my numbers in check. Hydroxyurea has kept my numbers down. Been taking 500 mg pill twice a day. After taking for 12 years, has just now started with the tingling/numbness in my fingers and some bone pain, little bloating after eating. Not real bad, but a nuisance. Doctor taking me down to one pill a day to see if tingling will go away while still keeping my numbers in check. To me, none of the side effects are debilitating, and since this med is keeping my numbers down and helping reduce strokes, it's worth it to me. When I first got polycythemia vera over 20 years ago, the web said life expectancy was 5 years. And here I am over 20 years later still with pretty good health."

• Bob
• Taken for less than 1 month
• July 12, 2023

For Polycythemia Vera "Just started hydroxyurea two weeks ago 1000 mg once a day. Number down from 56 hematocrit to 49, overs one million platelets to 700000. No side effects, except a little tired in the afternoon. 70 years old veteran, weekly phlebotomy for now. Take the meds in the morning with lots of water and coffee. Sleep well. Looking forward to getting my numbers to normal. Used to drink daily, nothing now for three months. Don't miss it, save money. Lost 40 pounds, feeling great. Good luck to all."

• Anonymous
• Taken for 1 to 2 years
• January 6, 2016

For Polycythemia Vera "My mom is in her 80's and was given this drug a year ago. Shortly after, she developed red (painful) nodules on one arm and then the other that would NOT go away until she was finally put on prednisone. She also has suffered from unexplained sore throat, difficultly breathing, along with no appetite. No doctor can't explain what the nodules are, not even with many, many, biopsies, blood test, cat scans ,etc. She has a feeling of overall sickness that she cannot describe, has been hospitalized multiple times over the last year due to the symptoms. Again, all doctors say it's NOT the hydroxyurea that she has to be given when her hematocrit numbers climb too high. Here we are a year later with no answers and my Mom is still sick."

• Hemen...
• November 28, 2016

Hydrea (hydroxyurea) for Chronic Myelogenous Leukemia "I was asked by my Doctor in Mumbai, India, to take Hydroxyurea 500 for 10 days and I got this Capsules of Hydrea from the store.my platelets were 650000 to start then After taking the capsules for 10 days the platelets count came down to 570000. I was advised to further continue the capsules for another 30 days. After 30 days the platelets count was 432000. I have not experienced any side effects."

• BreeM
• January 19, 2014

Hydrea (hydroxyurea) for Sickle Cell Anemia "Im 18 years old and even though I wasnt a sickle cell patient who had many pain crises , my doctor had still been suggesting me take hydrea since I will be starting college soon ( I guess just to be safe). Since taking it, I havnt had any severe pain crises, but I swear everyday it feels like my back is in a small pain crises. Which is scary because I never know if it's going to become a full blown crises. Im always having to take pain meds, or missing school because of this. Im thinking about if I should stop taking it for a while to see if the hydrea is whats causing this pain. because it can be my birthcontrol pills causing it but I highly doubt it. I wish there were more reviews on hydrea so I could know if it was just me."

• dr_so...
• August 2, 2011

Hydrea (hydroxyurea) for Sickle Cell Anemia "Hydroxyurea significantly improves the frequency of sickle cell crisis, but it has a long list of adverse effects. But if the dose is monitored properly and complete blood count of patient is done on regular basis, than some of the adverse effects can be easily identified and managed accordingly."

• Mom
• September 29, 2020

For Sickle Cell Anemia "My son started hydroxyurea at about 6 months of life due to having complications from sickle cell basically from birth. His hemoglobin was dropping, spleen was very large, distended abdomen, jaundice since birth, and first hospitalization occurred at 5 months old due to high fevers after having swollen hands for several weeks. Given his history, we decided hydroxyurea was the best option. 2 years later, his development is normal and no visible side effects from the drug (serious risks remain). He’s smart, affectionate, runs, jumps, shouts for joy, and falls to the ground during tantrums. Hematologist every 2-3 months, limit social interactions especially with sick people, avoid daycare, evening showers, and penicillin as recommended. He’s been hospitalized 3 additional times for high fevers but never for pain. Hydroxyurea is occasionally paused due to blood count. I am thankful hydroxyurea works for him and continue to pray he’ll be cured soon of this illness. We live in the US."

• 0707
• Taken for 1 to 6 months
• December 24, 2022

For Polycythemia Vera "Hydroxyurea has been very good for me. I have diagnosed been with Polycythemia Vera about 7 months ago. After a few months of phlebotomies with no success, I started on hydroxyurea and the results have been great. All my numbers are in acceptable ranges, and the only side effect has been joint pain in my feet. I had to get off the medication when I contracted COVID and all of the disease symptoms roared back. After being back on it for a couple of months, my numbers are back to normal and I feel great."

• Anon
• December 22, 2019

For Sickle Cell Anemia "My Experience with hydroxyurea For over 15 years I started taking this medicine when I turned 6 years old. Now I am 21 years old. Before hydroxyurea I often used to be hospitalized with severe pain and low iron levels. Since I started on it I have been hospitalized on average once a year, in fact a period of time went on for several years without hospitalization. I was healthy and living a normal life the years I was not hospitalized. I started with 500mg which then increased to 1000mg and then to 2000mg, due to the fact that I got older and put on weight over the years. To this day, I experience absolutely no side effects other than what the disease carries. It is fantastic that you now have other medicines that can perhaps replace hydroxyurea, but to this day you have nothing better than hydroxyurea. This medication is absolutely no cure. You must expect to have crises occasionally. One must have routine checks at the doctor. I live in norway which means a very good health care system"

• daleb
• November 23, 2015

For Thrombocythemia "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."

• JayDub
• January 20, 2013

For Sickle Cell Anemia "When I first started taking Hydroxyurea it made me a little sick. Yet, after about 2 weeks I noticed a slight increase in energy and went from having a hospitalization crisis every 2-3 months to about ONCE a year. I still take pain meds for the smaller pains but my lifestyle had gotten MUCH better. I would recommend it to any person with sickle cell. "

• Joe
• Taken for 6 months to 1 year
• August 25, 2022

Hydrea (hydroxyurea) "500 mg a day has brought my counts down to 700 after 6 months (was High Platelets >1200). No noticeable side effects from the drug, in fact the condition wasn’t noticeable either. Hematologist just started me taking 2 extra pills a week, trying to get the count down to 450. I’m not worried and thankful."