What are most common side effects when starting HU (Hydroxyurea)?

Posted by cdurbin @cdurbin, Jan 15 9:06am

What are the side effects most experienced when starting the HU? I'm still trying to decide if I'm going to start it on 1/26/24. My hematologist said we would go over the side effects then but I want to know what most have experienced since they would only report what "could" happen & not what DOES happen. Ex. It's a chemo pill- they usually cause hair loss. Does this apply with the dosages that we would need? After reading other posts, it's sounds like maybe 500 mg is the magic number for the HU dosage.

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@nypara66

I had some hair loss for the first few months until they lowered the dosage. Also, my teeth and gums felt sore and sensitive all the time. My oncologist said to hang in there and let my body adjust and I did and so did my body thankfully. The lower dose stopped my hair loss and my gums are back to normal. I also noticed tiny brown spots. Went to the dermatologist and he did that chemo drugs intensify past sun damage causing brown spots to come to the surface and to go every year to get my skin checked. I’m taking it since Jan 23. Good luck 😊

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I’ve been taking since January 4th and I’m definitely noticing the past sun spots getting worse. I’m also having muscle fatigue a bit quicker than normal and the occasional headache. Hoping it stops soon. Do you know if your skin goes back to normal after your body gets used to it?

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@johngrudnowski

I’ve been taking since January 4th and I’m definitely noticing the past sun spots getting worse. I’m also having muscle fatigue a bit quicker than normal and the occasional headache. Hoping it stops soon. Do you know if your skin goes back to normal after your body gets used to it?

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Mine did but also my dose was lowered from daily to 5X a week and now just 3X a week. I’ve been on this dosage now since June 23. I’m a 57 year old female with no other health issues and was diagnosed with PV in Jan 2023 after my annual labs showed high platelets , hematocrit and red cells extremely high. The previous year I was normal!!

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Cool. I’m taking daily (500mg 4 days) and 1000mg 3 days) and hopeful to get my platelets down and ideally adjust. Glad to hear that your body adapted I’m hopeful. I have ET and am 46. They have me on a higher dose because I also had a heart attack 2.5 years ago. We’ll see but it’s been ok so far.

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@jewelfaux

ForCDurbin: I am a 75 year old female and have been on HU for a year. I don't think there is a "magic number" for HU. I take 1000mg and alternate daily with 1500mg. I have had no side effects except fatigue, which is a problem, but better than the alternative of stroke or heart attack. I have no hair loss or other worrisome side effects. It was worth taking HU for me but everyone's body reacts differently to meds. Only you can determine if it's worth it for you.

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I just went to my hematologist today. My platelets were 708 everything else was good & pretty much the same as usual. My white count was up a little but still within normal limits but she wasn't concerned due to me having a sinus infection & just started antibiotics last night. We decided to try 500 mg 1x per day & see how I do. If not good then will adjust as needed. Labs get ran again in 3 weeks to see how doing.

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I have been taking 500 mg. per day of hydroxyurea since August of 2023. Daily leg pain is caused by hydroxyurea for me. Also, any former injury I have had in the past is attacked by the hydroxyurea and causes pain. The knee I injured in high school gymnastics in 1969 never had an issue with pain and instability until hydroxyurea and the knee has become more unstable and painful. 40 years ago I had Bell's Palsy when pregnant with our son, and I never had pain in the eye that is located on the side of my face where the Bell's Palsy occured. A few times a month I get a stabbing pain in the Bell's Palsy eye and that never happened unitl I was prescribed hydroxyurea for essential thrombocytosis. Weird as can be.

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@dkmitchell

I have been taking 500 mg. per day of hydroxyurea since August of 2023. Daily leg pain is caused by hydroxyurea for me. Also, any former injury I have had in the past is attacked by the hydroxyurea and causes pain. The knee I injured in high school gymnastics in 1969 never had an issue with pain and instability until hydroxyurea and the knee has become more unstable and painful. 40 years ago I had Bell's Palsy when pregnant with our son, and I never had pain in the eye that is located on the side of my face where the Bell's Palsy occured. A few times a month I get a stabbing pain in the Bell's Palsy eye and that never happened unitl I was prescribed hydroxyurea for essential thrombocytosis. Weird as can be.

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Anyone else try something different? There are other strings within this connect community on alternatives to Hydrea. I’m wondering.

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@dkmitchell- That's good to know. My 40's have been rough on me. I'm 47 & have had 2 meniscus repairs & currently have another tear in the remaining meniscus of my right knee. I've had 4 ankle surgeries for torn tendons & a ligament. I also had bells pulsey on the left side of my face in my 20's & now this ET diagnosis.

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@johngrudnowski

Anyone else try something different? There are other strings within this connect community on alternatives to Hydrea. I’m wondering.

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My brother and I have the JAK2 gene sibling mutation, and he could not handle the side effects Hydroxyurea and he is taking a different medication for the condition. I will have to ask him the name of that medication. I think he has fewer side effects than I have.

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@dkmitchell

My brother and I have the JAK2 gene sibling mutation, and he could not handle the side effects Hydroxyurea and he is taking a different medication for the condition. I will have to ask him the name of that medication. I think he has fewer side effects than I have.

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Cool. Thanks for the additional info @dkmitchell ……. and @cdurbin I also had a meniscus repair in my right knee when I was 23. I’m 46 now and my knee is certainly more painful after exercise since I’ve taken Hydrea. It hasn’t hurt in so long but now it’s like it needs to warm up a ton before exercise and just feels stiff and painful the day after. I’m told your body “gets used to it” and that stuff stops after a while but I don’t know.

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@cdurbin

@dkmitchell- That's good to know. My 40's have been rough on me. I'm 47 & have had 2 meniscus repairs & currently have another tear in the remaining meniscus of my right knee. I've had 4 ankle surgeries for torn tendons & a ligament. I also had bells pulsey on the left side of my face in my 20's & now this ET diagnosis.

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Your 40s have been very rough on you. I hope that despite the ET you have that the years ahead will be much kinder on your body.

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