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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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mdterp76 | @mdterp76 | Jan 29 9:04pm
In reply to @johngrudnowski "I’ve been taking since January 4th and I’m definitely noticing the past sun spots getting worse...." + (show)
@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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I started out taking HU 1x week for a month, 2x week for 8 months, and this week, at the one-year mark of my ET/Jak2 diagnosis, I am taking it 3x week. I have fatigue and dry skin. If you are taking HU daily, maybe a slower intake might help. My platelets started at 780K a year ago at age 69. Mine have gotten down to 500K, but they recently jumped to 580K, so I am taking HU 3x week. I also take daily iron and baby aspirin. My general blood work related to RBC has also improved.
Take care,
Karla

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cjs71 | @cjs71 | Jan 30 8:30am

I've been on Hydroxyurea since 2021. I was 69 when diagnosed with high platelets - 800,000 in a routine blood test and a bone marrow biopsy confirmed ET. The hematologist put me on Hydroxy starting at 3 doses a day (500 mg/pill) then a blood test, then dropped to 3 one day, 2 the next, then a blood test, and after 6 weeks of testing I was finally stable under 400,000 platelets. Now I'm at 2 pills a day for the last 3 years. I had no real side effects, maybe a little fatigue. I am moderately active, walking almost daily and doing some other exercises once a week. I take the 2 pills with a glass of water before breakfast and that has not given me any stomach trouble. I stopped taking baby aspirin because my mother had stomach problems and I am more sensitive to some foods now. I put on gloves before handling the pill bottle and pills (disposable gloves are everywhere now thanks to Covid). I wear a hat and put on sunscreen anyway as the sun here in NM is intense and I'm fair-skinned.

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nancyra | @nancyra | Mar 3 8:38am

I was on HU for 24 years. Only side affect was fatigue and yes- thinning hair.
Then I developed a bad case of locally advanced skin cancer on my head. As you know, on HU, you are sensitive to the sun and should be diligent with sunscreen all year round. But who put sunscreen on their head? I didn’t.
I was able to control it with a topical cream that took 6 months to eradicate it but I scared me off of HU. Please all- use sunscreen.

I am now on Anagrelide. I had no previous heart issues so it works for me.
Yes, it initially gave me some heart palpitations but my body adjusted.
I also take nicotinimide which works to thicken my hair and has been shown to be helpful in keeping skin cancer at bay. I am 66.
Was diagnosed with ET at 39.

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2 replies
tokyolin | @tokyolin | Nov 25 5:02pm

Is anyone on this list serve taking any of the new weight loss drugs along with HU? What has been your reaction?
Thanks. Linda (I have ET and take 500 mg HU per day.)

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Rhonda Gregory | @rjgregory440 | Nov 26 9:37am
In reply to @nancyra "I was on HU for 24 years. Only side affect was fatigue and yes- thinning hair...." + (show)
@nancyra

I was on HU for 24 years. Only side affect was fatigue and yes- thinning hair.
Then I developed a bad case of locally advanced skin cancer on my head. As you know, on HU, you are sensitive to the sun and should be diligent with sunscreen all year round. But who put sunscreen on their head? I didn’t.
I was able to control it with a topical cream that took 6 months to eradicate it but I scared me off of HU. Please all- use sunscreen.

I am now on Anagrelide. I had no previous heart issues so it works for me.
Yes, it initially gave me some heart palpitations but my body adjusted.
I also take nicotinimide which works to thicken my hair and has been shown to be helpful in keeping skin cancer at bay. I am 66.
Was diagnosed with ET at 39.

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I hope you wear a hat when you're outside now?
They may not be fashionable, but they will keep the sun off.

REPLY
mlmk0601 | @mlmk0601 | Nov 26 12:07pm
In reply to @nancyra "I was on HU for 24 years. Only side affect was fatigue and yes- thinning hair...." + (show)
@nancyra

I was on HU for 24 years. Only side affect was fatigue and yes- thinning hair.
Then I developed a bad case of locally advanced skin cancer on my head. As you know, on HU, you are sensitive to the sun and should be diligent with sunscreen all year round. But who put sunscreen on their head? I didn’t.
I was able to control it with a topical cream that took 6 months to eradicate it but I scared me off of HU. Please all- use sunscreen.

I am now on Anagrelide. I had no previous heart issues so it works for me.
Yes, it initially gave me some heart palpitations but my body adjusted.
I also take nicotinimide which works to thicken my hair and has been shown to be helpful in keeping skin cancer at bay. I am 66.
Was diagnosed with ET at 39.

Jump to this post

Thank for sharing your journey. I started HU early this year and you have given me renew hope since you took the med for 24 years. Best of luck with Anagrelide. Can I just ask what dosage were you taking your last year with HU?

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