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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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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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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

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1 reply
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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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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docoltun | @docoltun | Jan 18 9:42am

I have bern taking anagrelide for ET for over twenty years without side effects. A change in physicians resulted in nasty reactions (hair loss, upset stomach, diahhrea and uncontrolled platelets, white count dropped significantly) with blood draws and med adjustments every two weeks. after a couple months I found a doctor who put me back on anagrelide. Don't know why more don't try it. Originally I think it may have not had generic version, marketed as Agryln.

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2 replies
docoltun | @docoltun | Jan 18 9:52am
In reply to @docoltun "I have bern taking anagrelide for ET for over twenty years without side effects. A change..." + (show)
@docoltun

I have bern taking anagrelide for ET for over twenty years without side effects. A change in physicians resulted in nasty reactions (hair loss, upset stomach, diahhrea and uncontrolled platelets, white count dropped significantly) with blood draws and med adjustments every two weeks. after a couple months I found a doctor who put me back on anagrelide. Don't know why more don't try it. Originally I think it may have not had generic version, marketed as Agryln.

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Sorry, the doc change insisted I needed to be on HU, did terrible bone marrow test (5 attempts to get what was needed) even tho I told him my history.

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nohrt4me | @nohrt4me | Jan 18 10:40am

Anagrelide is contraindicated for some people with heart problems, as it can cause arrhythmia. It was my first choice over HU, but my cardiologist nixed it. Dad, on the other hand, did well on anagrelide.

A couple of years ago, there was a shortage of anagrelide that a few people reported in another ET support group. It's possible that doctors stopped prescribing it or moved patients to HU because of that.

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1 reply
nypara66 | @nypara66 | Jan 19 7:00am
In reply to @docoltun "I have bern taking anagrelide for ET for over twenty years without side effects. A change..." + (show)
@docoltun

I have bern taking anagrelide for ET for over twenty years without side effects. A change in physicians resulted in nasty reactions (hair loss, upset stomach, diahhrea and uncontrolled platelets, white count dropped significantly) with blood draws and med adjustments every two weeks. after a couple months I found a doctor who put me back on anagrelide. Don't know why more don't try it. Originally I think it may have not had generic version, marketed as Agryln.

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I read it wasn’t available until 2011? Hydroxyurea has been available since the 1960’s. It is extremely inexpensive as opposed to the over 8k a month for the other which also has a higher risk of side effects. I guess which ever works best is best but that the drug companies can rob patients that need meds such as these, should be thrown in jail!

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1 reply
lschmeit | @lschmeit | Jan 19 7:09am

I was on hydroxyurea for 7 years. I tolerated it well at initial higher doses, then also at 500 mg per day long term. Did not feel like I was on chemotherapy all that time!
Some dry skin and minimal hair loss though now that I'm off of the medication I think it was more age-related!
Hope you do well!
Lynn

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3 replies
marnie12 | @marnie12 | Jan 19 8:04am
In reply to @lschmeit "I was on hydroxyurea for 7 years. I tolerated it well at initial higher doses, then..." + (show)
@lschmeit

I was on hydroxyurea for 7 years. I tolerated it well at initial higher doses, then also at 500 mg per day long term. Did not feel like I was on chemotherapy all that time!
Some dry skin and minimal hair loss though now that I'm off of the medication I think it was more age-related!
Hope you do well!
Lynn

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Lynn, you say you no longer take HU. Did you change to another med for your MPN?

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