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

Posted by cdurbin @cdurbin, Jan 15, 2024

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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Profile picture for mw2023 @mw2023

I started HU with a night dose but after 5 weeks decided to change to a morning dose. This change gave me better sleep, vivid dreams gone, less need for using bathroom, not waking up at 5am, and fatigue doesn't hit until bedtime. It's only been a few days since changing to morning dose but it seems worth the change so far.

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I take Levothyroxine every morning since I have had a complete thyroidectomy. So HU at night works for me. I'm glad it's working for you to change to AM for HU. It's tricky juggling medications. I may need to try taking HU in the morning and Levo. at night....
Best to you!

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Profile picture for mumblipeg @mumblipeg

I take Levothyroxine every morning since I have had a complete thyroidectomy. So HU at night works for me. I'm glad it's working for you to change to AM for HU. It's tricky juggling medications. I may need to try taking HU in the morning and Levo. at night....
Best to you!

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I also take Synthroid for thyroid every morning around 8:30. I eat a late breakfast and wait until 12:30 to take HU. Have you been told to have 12 hrs between thyroid meds and HU? My sister takes her thyroid meds before bed but she eats an early dinner and likes to eat breakfast immediately and not wait the hour. I guess I might have to rethink my plan also. Main question is how long to wait to take HU after Synthroid? I might have to push it to mid-afternoon. Oncologists don't seem to know this issue so will have to ask endocrinologist.

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Profile picture for mw2023 @mw2023

I also take Synthroid for thyroid every morning around 8:30. I eat a late breakfast and wait until 12:30 to take HU. Have you been told to have 12 hrs between thyroid meds and HU? My sister takes her thyroid meds before bed but she eats an early dinner and likes to eat breakfast immediately and not wait the hour. I guess I might have to rethink my plan also. Main question is how long to wait to take HU after Synthroid? I might have to push it to mid-afternoon. Oncologists don't seem to know this issue so will have to ask endocrinologist.

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I started Hydroxyurea 7/05/25 500mg daily. Very mild side effects including short episodes of hot flashes, a tiny hint of nausea a few times, and two episodes of fatigue. After napping a few hours I felt much better following g the fatigue. My dose was just increased to 1,000 mg daily due to increased platelets. A bone marrow biopsy is scheduled three days from now.
I am trying to eat very little processed foods, am drinking a lot of water, and jogging in the pool for an hour every day. Hopefully these efforts may be helping to minimize side effects 🤷‍♀️

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Profile picture for mw2023 @mw2023

I also take Synthroid for thyroid every morning around 8:30. I eat a late breakfast and wait until 12:30 to take HU. Have you been told to have 12 hrs between thyroid meds and HU? My sister takes her thyroid meds before bed but she eats an early dinner and likes to eat breakfast immediately and not wait the hour. I guess I might have to rethink my plan also. Main question is how long to wait to take HU after Synthroid? I might have to push it to mid-afternoon. Oncologists don't seem to know this issue so will have to ask endocrinologist.

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I have taken my Synthroid for years first thing in the morning and always at least an hour before eating. When I started 1000mg of HU about five years ago, hematologist suggested I take the HU at night before bed in order to minimize side effects. She knew I was on Synthroid and never mentioned it in that discussion. I can’t say I’ve ever been nauseous and attributed it to the HU. So, there’s at least an 8 hr gap between HU and Synthroid.

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Profile picture for stickball1 @stickball1

Baby aspirin (81mg) should be taken prophylactically every day if you’re over 60 even if you’re in good health. That’s a no-brainer. As I’ve said in previous posts, the secret to controlling your ET is finding the right hematologist, periodic blood testing and paying attention to any body changes. I’m 87 years old and quite active for my age. I had successful bypass surgery in April of 2024 and the ET diagnosis showed up after surgery. I’m convinced that I acquired the JAK-2 gene mutation which led to the ET diagnosis through blood transfusions I received during the surgical event. So far I’ve not heard from anyone on this blog if the same diagnosis occurred after they’ve received blood transfusions.

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I am 82 years old. My platelet count had been slowly increasing and a year ago my primary doctor referred me to a hematologist. I was diagnosed with ET and the JAK-2 gene mutation. I have often wondered how I acquired it. I had a blood transfusion in 1977 and also had Covid shots.

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Profile picture for sylann725 @sylann725

I am 82 years old. My platelet count had been slowly increasing and a year ago my primary doctor referred me to a hematologist. I was diagnosed with ET and the JAK-2 gene mutation. I have often wondered how I acquired it. I had a blood transfusion in 1977 and also had Covid shots.

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"How I acquired it" -- that's the baffling question. No one knows the answer.

A broken bone, anyone can understand. Bone marrow going haywire -- huh? Such fun to live with a medical mystery.

I'm no expert, just someone else with ET, but I hope you will stop worrying about whether those Covid shots "caused" your cancer. ET has been around for a long time. It was recognized as a blood disorder/cancer more than a hundred years ago. And as you know, there were no Covid shots back in the 1920s.

Alas, the possibility of "catching" ET from a blood or organ donation has NOT been ruled out.

That's why, upon diagnosis, I stopped donating blood. And I also have removed the "organ donor" designation from my driver's license.

I hope the hematologist is providing you with excellent care!

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Profile picture for janemc @janemc

"How I acquired it" -- that's the baffling question. No one knows the answer.

A broken bone, anyone can understand. Bone marrow going haywire -- huh? Such fun to live with a medical mystery.

I'm no expert, just someone else with ET, but I hope you will stop worrying about whether those Covid shots "caused" your cancer. ET has been around for a long time. It was recognized as a blood disorder/cancer more than a hundred years ago. And as you know, there were no Covid shots back in the 1920s.

Alas, the possibility of "catching" ET from a blood or organ donation has NOT been ruled out.

That's why, upon diagnosis, I stopped donating blood. And I also have removed the "organ donor" designation from my driver's license.

I hope the hematologist is providing you with excellent care!

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I definitely does not have anything to do with covid or the shot or a blood transfusion. I was diagnosed after covid & I did not take any of the vaccines & I have never had a blood transfusion. My hematologist said they dont know why the mutation happens & that it's typically caught in older adults because they typically get more blood work done than younger adults. Im only 48 & was diagnosis with ET Jak 12 positive at 47. It was caught on a random blood test that I had done. My levels when 1st diagnosed were around 780's. Im not on anything but baby aspirin for now due to my low risk of blood clots & no history of them. I take plenty of other vitamins daily & my levels have been staying around 630's -670's. I was told I probably have had it for several yrs. before it actually started causing symptoms & increased levels. I thought the symptoms were being caused by being in peri menopause since some are the same. I also started having lots of migraines almost daily to the point I was out on a preventive medication about 10 yrs.ago. Who knows, that could have been when it happened since headaches are one of the symptoms. Hope this helps.

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Profile picture for cdurbin @cdurbin

I definitely does not have anything to do with covid or the shot or a blood transfusion. I was diagnosed after covid & I did not take any of the vaccines & I have never had a blood transfusion. My hematologist said they dont know why the mutation happens & that it's typically caught in older adults because they typically get more blood work done than younger adults. Im only 48 & was diagnosis with ET Jak 12 positive at 47. It was caught on a random blood test that I had done. My levels when 1st diagnosed were around 780's. Im not on anything but baby aspirin for now due to my low risk of blood clots & no history of them. I take plenty of other vitamins daily & my levels have been staying around 630's -670's. I was told I probably have had it for several yrs. before it actually started causing symptoms & increased levels. I thought the symptoms were being caused by being in peri menopause since some are the same. I also started having lots of migraines almost daily to the point I was out on a preventive medication about 10 yrs.ago. Who knows, that could have been when it happened since headaches are one of the symptoms. Hope this helps.

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"I thought the symptoms were being caused by being in peri menopause since some are the same."

Thanks for making that connection. I was 55, had already gone thru the change, but symptoms were still waved away as menopausal, even tho my actual menopausal symptoms were a breeze compared to what others go thru. Finally, at age 60, an alert cardiology nurse saw my platelets had been in 600s for several years. "Hmm, let's figure this out," she said. That's when I was finally diagnosed.

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Profile picture for nohrt4me (Jean) @nohrt4me

"I thought the symptoms were being caused by being in peri menopause since some are the same."

Thanks for making that connection. I was 55, had already gone thru the change, but symptoms were still waved away as menopausal, even tho my actual menopausal symptoms were a breeze compared to what others go thru. Finally, at age 60, an alert cardiology nurse saw my platelets had been in 600s for several years. "Hmm, let's figure this out," she said. That's when I was finally diagnosed.

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❤️

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I haven’t experienced any of the symptoms mentioned for ET or myelofibrosis and went through menopause uneventfully. Who knows how long my platelets have been high is anyone’s guess. I have never had a clot and my recent CT showed none were found and I do not have an enlarged spleen. I eat healthy and am a good weight for short 5 foot 2 2/3 inch height at 106-108. I have normal BP and have tons of energy and no pains and no headaches, so I just thank God daily and do not worry about what MPN I might have. I do take low dose aspirin daily as I do have high platelets. I choose not to take Hydrea and never have as if I truly have myelofibrosis I do not need to tank my red cells, hemoglobin, and white cells along with lowering platelets as Hydrea lowers all of them. Yes, I am 65 with CALR mutation, but I just do not think age alone should dictate medication prescribed. That is just my opinion.

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