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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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ger63 | @ger63 | Jan 18 6:41am

I have been on HU 500mg daily for 3 years (M-F). My skin is pale and dry. I am not sure if I notice fatigue. I am pooped by the end of the day though. Stay hydrated and moisturize. Also, keep up with your labs as directed. Best of luck.

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cdurbin | @cdurbin | Jan 17 7:49pm
In reply to @memere09 "I have had hair loss also. When I started taking HU I asked about it and..." + (show)
@memere09

I have had hair loss also. When I started taking HU I asked about it and the doc said he hadn’t heard of it. I am currently in 1500mg per day and I certainly have thinking hair.
I experience fatigue with anything over 500 mg per day so by late afternoon early evening I am finished for the day

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I found this on medlineplus.gov

What side effects can this medication cause? has been expanded.
Hydroxyurea may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:
nausea
vomiting
diarrhea
loss of appetite
weight gain
sores in the mouth and throat
constipation
rash
pale skin
dizziness
headache
hair loss
changes in skin and nails

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memere09 | @memere09 | Jan 17 2:00pm
In reply to @preacherswife1977 "When I first started taking HU I had taken it 500 MG 9 days in a..." + (show)
@preacherswife1977

When I first started taking HU I had taken it 500 MG 9 days in a row. It brought my platelets down to the normal range but I felt awful. I had so much fatigue and bone pain. They then started me on the 500 MG 3 times per week MWF. I am ok with that dosage. I will have a tired day once in a while and bones aching/hurting especially my shins. My platelets are creeping back up so he may change my dosage . I have lost some hair but not bad, It is NOT coming out by the handfuls. My Dr said that was not one of the side effects. I told him it may not be but mine was not coming out before HU. I was diagnosed in August of 23. I have requested a second opinion with the Mayo Clinic. Praying for the best for you!!

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I have had hair loss also. When I started taking HU I asked about it and the doc said he hadn’t heard of it. I am currently in 1500mg per day and I certainly have thinking hair.
I experience fatigue with anything over 500 mg per day so by late afternoon early evening I am finished for the day

REPLY
1 reply
nohrt4me | @nohrt4me | Jan 17 8:49am

Hair and nails: I take 500 mg HU daily + additional 500 mg M-W-F. Yes, some hair thinning, but nothing noticeable to others. Nails split and break. Discoloration of nails is a documented side effect of HU, but I have not noticed it. Skin is dry. Slather on the moisturizer and keep face covered in the cold. Those breathable silk gaiters you can pull over your nose are nice.

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1995victoria | @1995victoria | Jan 16 5:45pm

My fingernails tend to splinter more and break Don't know if HU, ET or old age????

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Rhonda Gregory | @rjgregory440 | Jan 16 10:57am

Hydrea does not cause hair loss in the low doses most of us take...it has been an effective drug for over 60 years. In much higher dosages it can have side effects, but so can aspirin and cough medicine. Just follow the instructions ( Take with a meal, drink LOTS of water, and avoid prolonged sun exposure). The very high risk of a pulmonary embolism or a stroke without the medication is so much worse.

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janemc | @janemc | Jan 16 8:57am

Because my platelet count was 600/700 and I'm 69, my oncologist started me on HU in October 2023. For a month I took 1 500mg capsule a week.

Since that didn't lower the platelet count, I'm now taking 1 500mg capsule 3 times a week.

I'm glad I started HU at a low dose -- that could be why I've had no problems at all with it.

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debhammel | @debhammel | Jan 16 8:56am

I was diagnosed with ET in November and was on 500 mg HU twice a day, 7 days a week. My platelets initially were at 692 and are now at 172! My dosage has dropped to 500 mg twice a day, 4 days a week and we shall see how I'm doing at my blood draw next Tuesday. Finding the right dosage is trial and error. I have experienced no noticeable side effects. I'm 69 years old and considered high risk due to my age. I'd recommend not worrying about the side effects as, obviously from the comments, we all react differently.

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1995victoria | @1995victoria | Jan 16 8:50am
In reply to @preacherswife1977 "When I first started taking HU I had taken it 500 MG 9 days in a..." + (show)
@preacherswife1977

When I first started taking HU I had taken it 500 MG 9 days in a row. It brought my platelets down to the normal range but I felt awful. I had so much fatigue and bone pain. They then started me on the 500 MG 3 times per week MWF. I am ok with that dosage. I will have a tired day once in a while and bones aching/hurting especially my shins. My platelets are creeping back up so he may change my dosage . I have lost some hair but not bad, It is NOT coming out by the handfuls. My Dr said that was not one of the side effects. I told him it may not be but mine was not coming out before HU. I was diagnosed in August of 23. I have requested a second opinion with the Mayo Clinic. Praying for the best for you!!

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I also have shin pain, especially at night in bed. Also bones in big toes ache. Dr says not ET, but I think it is

REPLY
cdurbin | @cdurbin | Jan 15 8:55pm
In reply to @janetbender "Your doctor will decide your HU dosage. Four mo ago my platelet count was 1.1 million...." + (show)
@janetbender

Your doctor will decide your HU dosage.
Four mo ago my platelet count was 1.1 million.
I take 500 mg daily HU and my platelet count is 600k.
It’s still going down and I feel better than 4 mo ago.
The worst of the side effects - because we read everything before seeing the doc - was later explained is for other diseases with 8,500mg daily!
Everyone reacts differently but my side effects lasted a few weeks.
I have slight hair loss, stomach ok, just fatigue. I’ve had long Covid so I can’t always attribute symptoms….
Make a list of questions to discuss with your doc. My list gets shorter with each visit!

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I also keep a running list of questions. I use wegovy for weight loss & already deal with nausea on the first couple days of each week. I also already deal with fatigue as one of my ET symptoms. I'd hate for it to get worse. I work from home so I sometimes have to take a nap during my lunch hour in order to make it thru the day.

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