Hydroxyurea for Sickle Cell Anemia User Reviews

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

Hydroxyurea "I have Sickle Cell Disease-SS Hemoglobin. My hematologist started me on Hydrea in 2001, and I'm still on it. I'm in my early 40s, and it has 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 supposed to do). I have a lesser 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 crises in joints that made me go to the ER but not admitted about 3 months out of the entire year. My RBC and WBC counts are still looking good. You HAVE to keep your doctor appointments and tests while on this medication. I do have extreme nausea and 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 the pros and cons. But we FINALLY have a choice now!"

• S3D...
• Taken for 10 years or more
• December 31, 2018

"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 of things."

• Bre...
• January 19, 2014

Hydroxyurea "I'm 18 years old, and even though I wasn't a sickle cell patient who had many pain crises, my doctor had still been suggesting I take Hydrea since I will be starting college soon (I guess just to be safe). Since taking it, I haven't had any severe pain crises, but I swear every day it feels like my back is in a small pain crisis. Which is scary because I never know if it's going to become a full-blown crisis. I'm always having to take pain meds or miss school because of this. I'm thinking about if I should stop taking it for a while to see if the Hydrea is what's causing this pain. Because it can be my birth control 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_...
• August 2, 2011

Hydroxyurea "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 the complete blood count of the patient is done on a regular basis, then some of the adverse effects can be easily identified and managed accordingly."

• Mom...
• September 29, 2020

"My son started hydroxyurea at about 6 months of life due to having complications from sickle cell basically from birth. His hemoglobin was dropping, his spleen was very large, distended abdomen, jaundice since birth, and the 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."

• Ano...
• December 22, 2019

"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 500 mg, which then increased to 1000 mg and then to 2000 mg, 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."

• Jay...
• January 20, 2013

"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."

• nos...
• March 30, 2010

"I've been taking this medicine for about six weeks or so, and the problem so far has been that my nail beds are turning black. A little freaked out right now, but surprisingly, I've been feeling a lot better."

• Avi...
• Taken for 2 to 5 years
• December 7, 2017

"I am 44. I used to take hydroxyurea for many years. I stopped being hospitalized as often as I used to. But my nails were brittle, my belly had bad pain inside, my hair was coming out, and last, my teeth in my mouth were falling out. I went to the dentist, they said it's the chemo in the drug. So I stopped taking it. But my teeth are also so bad now, and yet I have no dental. I am grateful for not being in the hospital like I used to, but my teeth are all messed up."

• HCW...
• Taken for 10 years or more
• February 23, 2020

"I am a 69-year-old woman with sickle beta+ thalassemia, was having multiple episodes of pneumonia yearly, and my doctor thought adding hydroxyurea would lessen them as they are sometimes indistinguishable from chest pain syndrome. Plus, my pneumonias were asymptomatic. I started taking it in 2005, and in the beginning, I had hair loss, but over time, that adjusted, although my hair growth is slow. I have had far less frequent crises and have not had one since 2016. Before that, I had just 2 minor crises. I have far less joint pain now, and with taking glutamine (since 2018) with hydroxyurea, I am relatively pain-free except for my back and stomach. But I plan to continue taking these meds until there is a cure for sickle. If you take it, you MUST follow your doctor's advice and see him regularly for blood tests, etc. It is not a med to take with a cavalier attitude as it is to help prevent serious sickle cell complications, and for me, it does just that. I am grateful to have it."

• Lop...
• Taken for 1 to 6 months
• January 18, 2020

"Male, 40, living in sub-Saharan Africa - Lagos. I’m hbSS, and my crises have become less frequent over the course of my life, from 5 to 6 times annually as a teenager to a maximum of 1 annually after age 25 till now. I took hydroxyurea for the first time 2 months ago, recommended by my hematologist after an unexpected exchange transfusion. My usual shortness of breath is reduced significantly. I can climb flights of stairs. The doc says I wasn’t given it before because they didn’t think it was necessary. My nails and palms are usually pale and white, but now look normal. Side effects include mild nausea - food doesn’t taste nice anymore, and some constipation - my distended stomach became normal around age 20 but is now back. I go off it for a day once in a while."

• Lad...
• Taken for 5 to 10 years
• May 5, 2023

"Hydroxyurea is the best thing that could ever happen to me. I started taking it back in 2014. After taking it for a while, I started having minimal sickle cell crises. Then, in 2016, there was something else going on in my body that I was not managing, and I had a severe crisis. After taking control of that situation, I have not had another crisis since. Today is May 12, 2023, and I have not had a crisis since 2016."

• gab...
• December 14, 2009

Hydroxyurea "Haven't been hospitalized since I started taking it. But I did gain a little weight."