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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My dad was diagnosed with PV last April. He is 97 years old, has diabetes, and an intestinal obstruction. He has been frequently admitted to the hospital for bowel obstruction. The doctor suggested taking the HU (500 mg daily). All family members are against the medication. They are worried that he might not be able to tolerate it, and the pill may do more harm than good. Since then, he has been getting weaker gradually. Does anyone have experience with seniors on HU usage?

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Profile picture for christina3444 @christina3444

Wouldn’t we all like a nickel for every time a symptom, complaint was diagnosed as menopausal!
And, again and again, thank God for a good nurse!

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Honestly I began menopause and was diagnosed just four months later with PV. So many symptoms are identical. Headaches, tingling, burning, brain fog, hot flashes/night sweats, red face? All apply to both. Gotta keep going and treat symptoms as they arise and keep truckin!

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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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Wouldn’t we all like a nickel for every time a symptom, complaint was diagnosed as menopausal!
And, again and again, thank God for a good nurse!

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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 have had this disorder or I guess was diagnosed about 5 years ago.
My thoughts were I have sleep apnea and that also went on diagnosed. So maybe my marrow trying to produce enough Hemoglobin as I was oxygen starved maybe my Marrow learned that behavior and never went back to the norm. I know cells have memory . Now I'm not Doc but but it made sense to me .

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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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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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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.

Jump to this post

"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.

REPLY
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!

Jump to this post

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.

REPLY
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.

Jump to this post

"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!

REPLY
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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