Side effects of hydroxyurea

I was diagnosed with ET CALR+ gene with platelets over a million a year ago. I also have had osteoporosis for years. I am 74 and the hematologist changes the dosage of hydroxy between 500 once a day every day to twice a day depending on the platelets and white blood cell count. I get a cbc monthly which he reads and then determines my dosage. I see my hematologist every six months. My platelets are now vary between 300 - 600. I am also on a daily aspirin and get Prolia every six months. I’ve been on Prolia for 4 or 5 years. Prolia has been great with no side effects compared to Fosamax which made me feel the worst I’ve ever been in my entire life. Yes, i sometimes feel tired, achy or upset stomach from the Hydroxy or lactose intolerant. All of that is minor compared to blood clots or a stroke. I bike, exercise, play with my grandchildren, go on visits with my therapy dog , ride my horse and spend time with friends. Off to the Netherlands to do a bike and barge trip so blood cancer and the side effects is just part of my life now.

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Thank you so much for sharing your experiences! You're an inspiration to us all.

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Been on Hydroxy for 2+ years. Side effects didn’t kick-in for quite some time—maybe a year. I do not feel tired (74 years old) but I take meds before bed, so maybe that is why. I love the sun. Dr said to just be reasonable about sun. I do experience the sensation that my shins are sun burned, but it goes away in a few minutes. I also have experienced other phantom sensations like there’s a thread on my leg, or a bug on my ankle… which there is not, and the sensation goes away as soon as I confirm there is nothing there 🙂

@lynns51 I also started taking HU at the beginning of April….500 mg daily. I was diagnosed with thrombocytosis 4 1/2 years ago and have been being monitored since then. My last blood test registered 932 so my hematologist started me on hydroxyurea. (I think that’s what HU stands for ?) The first week I was really thirsty, itching and nauseated. Feeling better now but definitely tired. I was wondering if you had any issues with blurred vision before starting HU? I have but not sure it has anything to do with this condition. I’ll be following you to see how you are doing and how it compares to my situation. In advance, thank you.

@a10sgal Thank you for your comment. I am experiencing some vision issues. I had cataract surgery about 2years ago. My vision improved except that I saw dark curved arcs on the outer edge of my eyes. This is something that can happen and grows less noticeable as time passes and the brain learns to ignore the arcs. Since taking HU the arcs are back and hard to ignore. They stay off to the far side of my eyes and tremble which is annoying, but my vision is still good. I also now have some blue tinges to the bed of my fingernails. My thumbs are particularly noticeable. Some days I am very tired and slightly nauseated. My doctor gave me medication to deal with that. I’ve noticed some slight hair loss. I have always had very thin, fine hair, so I was really hoping that wouldn’t happen! I plan to go over all this at my next appointment. Right now I’m grateful that I can mostly do what I want, but I tire so easily that I hope all the side effects do go away soon! I keep exercising as I have all my life. My husband has always helped around the house, but he cut three fingers on his table saw last month and that has been quite a painful experience for him that will take some time to heal. So, it is what it is and we deal with it, right? This message board has been a great help to me. I hope to keep documenting my progress here and follow fellow members.

After starting Hydrea April 1, this year -500 mg twice daily -my platelet count went from 823 to 359. But my eGfr went from 48 to 60. Creatinine levels fell also. The CNP said that maybe the platelets were gunking up my kidneys. Anybody else had this happen?

@sunshine1983 Hi i’m on Besremi For my ET on 150mcg Started March 1st on 50mcg two Shots than upped too 100For two Shots Did one Shot So far at 150mcg platelets Where Down From 601too 527

Was on it For 26months No side Affects i’m a Roofing Contractor didn’t notice anything with the Sun. But Never Got platelets too Normal Was on 1000mg Mon thur Fri than 1500mg Sat Sun . On Besemi Now Better Results as of Now on 150mcg platelets on Fri Where 527

Hi @lynns51 One thing that might be helpful for you is to drink plenty of water. When I was undergoing my treatments for leukemia the daily intake of water was at last 84 ounces. I still drink at least 64 to 80+ daily. It can help to keep the toxins flushing through the kidneys. Room temp water is absorbed better and most people can drink more during the day than with ice water.

Just curious with your comment though. I wonder if you meant to say your eGFR dropped from 60 to 48 instead of the other way around?

@sunshine1983 Hi there! I tried HU for a month and by the end I was in so much pain with fevers and chills that I had to stop. How hard was it to get on Besremi and how are you tolerating that?