Hydroxyurea for Polycythemia Vera User Reviews

• Ter...
• July 8, 2009

"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."

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

"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."

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

"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."

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

"After a few months of taking this medicine, I had severe joint pain, 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 the 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."

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

"My mom is in her 80s 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, difficulty breathing, along with no appetite. No doctor can explain what the nodules are, not even with many, many biopsies, blood tests, 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."

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

"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."

• 070...
• Taken for 1 to 6 months
• December 24, 2022

"Hydroxyurea has been very good for me. I have been diagnosed 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."

• Mou...
• Taken for 2 to 5 years
• April 21, 2024

"I have been taking HU for about 3 years now. No problems that I know of. My blood counts are normal according to the MPN specialist I see. I prefer it very much to the phlebotomy I had to have before taking the HU. I have not had a phlebotomy since starting the HU. Phlebotomies are a medieval torture. Hope anyone who needs this drug does as well. I have PV and take 9 capsules per week."

• Lil...
• Taken for 6 months to 1 year
• May 4, 2023

"I had a severe gum infection and had a gingivectomy while on hydroxyurea for my polycythemia vera."