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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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eferret | @eferret | Jan 5 2:12pm
In reply to @lynnebgraham "I am also inerested in what medication you are currently taking. I was on Anagrelide for..." + (show)
Profile picture for lynnebgraham @lynnebgraham

I am also inerested in what medication you are currently taking.
I was on Anagrelide for over 15 years. No side affects at all. Apparently taking Anagrelide for long period can cause Myelofibrosis. Currently waiting results of Bone Marrow test and my GP told me to take Hydroxyurea till I seed specialist as my platelet count was dangerously high. No one told me it was a chemotherapy treatment. I found out that by dr google.

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I would recommend anyone on hydroxyurea to look into Besremi. It has been shown to significantly reduce the risk of myelofibrosis, which can occur in 20-30 percent of people with MPN's like PV or ET 10-12 years after diagnosis.
You can go online and read about the benefits of taking Besremi at besremi.com. There is a phone number on the website to call PharmaEssentia to apply for financial assistance to pay for Besremi. PharmaEssentia can help coordinate the pre-authorization process with your insurance provider.
I am taking hydroxyurea and asked my doctor to consider putting me on Besremi because with my severity of PV I have a higher risk of blood clots and myelofibrosis. I hope to hear from PharmaEssentia this week.

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nypara66 | @nypara66 | Jan 5 6:42am

I started on seven days a week and felt like crap. Hair loss, and super sensitive to sunlight, even through my clothes. Also I had inflamed gums and tooth sensitivity. My doctor said to hang in there and let my body adjust. After two months I was lowered to five days a week and seven months in I was lowered to three days a week which I’ve been taking now about 18 months. I have very little side effects now and my platelets are in the 400’s. They were at 840 when I began. I am 58 and was diagnosed with Polycythemia Vera two years ago. Give it a chance. It’s been around since the 1960’s which is very reassuring to me.

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nypara66 | @nypara66 | Jan 5 6:36am
In reply to @lynnebgraham "I am also inerested in what medication you are currently taking. I was on Anagrelide for..." + (show)
Profile picture for lynnebgraham @lynnebgraham

I am also inerested in what medication you are currently taking.
I was on Anagrelide for over 15 years. No side affects at all. Apparently taking Anagrelide for long period can cause Myelofibrosis. Currently waiting results of Bone Marrow test and my GP told me to take Hydroxyurea till I seed specialist as my platelet count was dangerously high. No one told me it was a chemotherapy treatment. I found out that by dr google.

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Yea for some reason they never tell you that? I found out also by reading about it after prescribed. Sucks I’ll be on it for life with having PV. I’m two years in this month and it’s under control but I hate the meds! Jakafi is super Expensive and the only other choice for PV patients. It also can cause organ damage, but they monitor with labs. I’m glad you tolerated it well but sad that you developed something else now from the meds. Blood illnesses suck!

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janemc | @janemc | Jan 5 6:11am
In reply to @lynnebgraham "I am also inerested in what medication you are currently taking. I was on Anagrelide for..." + (show)
Profile picture for lynnebgraham @lynnebgraham

I am also inerested in what medication you are currently taking.
I was on Anagrelide for over 15 years. No side affects at all. Apparently taking Anagrelide for long period can cause Myelofibrosis. Currently waiting results of Bone Marrow test and my GP told me to take Hydroxyurea till I seed specialist as my platelet count was dangerously high. No one told me it was a chemotherapy treatment. I found out that by dr google.

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Yes, hydroxyurea (HU) is a chemo drug -- nobody likes the sound of that. I'm so sorry you didn't get a better explanation from your GP.

HU has been used for decades to treat not just ET and other MPNs, but also for sickle cell anemia. It helps lots of people every day.

And now it is helping you too.

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lynnebgraham | @lynnebgraham | Jan 4 4:39pm
In reply to @lschmeit "I was on hydroxyurea for 7 years. I tolerated it well at initial higher doses, then..." + (show)
Profile picture for lschmeit @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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I am also inerested in what medication you are currently taking.
I was on Anagrelide for over 15 years. No side affects at all. Apparently taking Anagrelide for long period can cause Myelofibrosis. Currently waiting results of Bone Marrow test and my GP told me to take Hydroxyurea till I seed specialist as my platelet count was dangerously high. No one told me it was a chemotherapy treatment. I found out that by dr google.

REPLY
4 replies
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1995victoria | @1995victoria | Jan 3 12:24pm

I've been on HU since 2021, only the first year my gut wasn't happy, but it adjusted after first year. I also have my devices set to remind me at 730pm, seems to work for me.....all the best.....

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Jennifer | @williamsjen | Jan 1 10:59am
In reply to @nancyra "I was on HU for 24 years. Only side affect was fatigue and yes- thinning hair...." + (show)
Profile picture for nancyra @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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Thanks for sharing as this information is great to know. being on HU for 24 years and you are doing well. Happy New Years!

Jennifer

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Jennifer | @williamsjen | Jan 1 10:56am
In reply to @evaet "I have Essential Thrombocythemia. Started with 3 pills weekly of hydroxyurea, and now at once a..." + (show)
Profile picture for evaet @evaet

I have Essential Thrombocythemia. Started with 3 pills weekly of hydroxyurea, and now at once a day as my platelets were not going down enough. I was told to take in the am with my other meds and vitamins. Gave me diarrhea. I decided on my own to take hydroxyurea in the evening after dinner. Fewer tummy problems. Other than softer stools, not much of an adjustment. I have started to have very vivid dreams, often pretty weird ones, that linger and stay with me after waking. But nothing really frightening. Other than that, so far so good.

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I took your advice and started taking hydrae between 7 pm and 8pm. I split my blood pressure 5mg to take after breakfast, my 80mg aspirin around 1pm and my hydrae around 7 or 8 2 hours before bed. I have slept much better do have weird dreams but, I can deal with that. sometime not all the time feel vague in afternoon I work from home so that works out well. sometimes I notice being forgetful but can come with me being 64 years old and holding down a job managing a lot of staff, so I don't worry just write more things down.

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mlmk0601 | @mlmk0601 | Nov 26, 2024
In reply to @nancyra "I was on HU for 24 years. Only side affect was fatigue and yes- thinning hair...." + (show)
Profile picture for nancyra @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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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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Rhonda Gregory | @rjgregory440 | Nov 26, 2024
In reply to @nancyra "I was on HU for 24 years. Only side affect was fatigue and yes- thinning hair...." + (show)
Profile picture for nancyra @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.

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