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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@christina3444

Dear janemc, Well, you could be right. After I was diagnosed with PV I told two “friends” and was shocked by the lack of reaction. Neither asked me what the prognoses was or even how I felt. And, in subsequent conversations that did not change.
Maybe you’re right about “comprehension” but they’re pretty smart and know how to use Google.
I knew these two to be caring people who I thought I could depend on for some support while I myself came to know more about the condition. I was wrong.
I guess it’s just not as “sexy” as other diagnoses! And, I am glad for that.
I’m not a joiner and it took me a long time before I started participating in this forum and I’ve felt better since I did. Both for being able, I hope to provide some help to others, and for being able to “speak” with others who appreciate what Im going through.

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As if a mysterious and scary diagnosis weren't bad enough . . . I'm really sorry your "friends" weren't kinder. Sadly, yours was not an isolated incident.

My sister, whom I've supported through two kinds of acute cancer, informed me that she'd researched ET, and it wasn't anything to worry about. All I had to do was eat more cinnamon! (Huh?)

This forum really saves my sanity.

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@janemc

gigi05, thank you for your sweet note!

It seems to me that most people really don't care what others are going through. And even if they have some empathy, a weird blood cancer is way beyond their comprehension. So at the moment you most need support, you feel totally alone.

But here, we do understand, and we do care. You're among friends here.

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Dear janemc, Well, you could be right. After I was diagnosed with PV I told two “friends” and was shocked by the lack of reaction. Neither asked me what the prognoses was or even how I felt. And, in subsequent conversations that did not change.
Maybe you’re right about “comprehension” but they’re pretty smart and know how to use Google.
I knew these two to be caring people who I thought I could depend on for some support while I myself came to know more about the condition. I was wrong.
I guess it’s just not as “sexy” as other diagnoses! And, I am glad for that.
I’m not a joiner and it took me a long time before I started participating in this forum and I’ve felt better since I did. Both for being able, I hope to provide some help to others, and for being able to “speak” with others who appreciate what Im going through.

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@gigi05

@janemc
Thank you so much for your caring response. It felt so good to read your last statement, 'I'm so sorry for your diagnosis" I'm going to remember that and remember to tell other newly diagnosed folks that. You see, I have not really heard that from people close to me. In fact, they have told me straight up to my face, things like, you don't have a diagnosis, or disease, you (just) have a condition. It's sort of like, what's the big deal, stop talking about it, or stop worrying about it, etc. I understand some people just don't have the emotional skills or empathy, but sometimes you just hope to hear it from those closest to you. So, thank you!
Now about the dyes, I mentioned it in another post just now. But perhaps others are like me, sometimes i cannot find the other posts again.
I spoke with a compounding pharmacist connection, and she told me that she cannot compound it for me and leave all the unnecessary toxins out because HU is so toxic and would need to create a special setup. she told me that there is a white tablet available, and that the dyes are the just in the capsules not in the white tablet. Dont know yet whether the doc needs to write the script a certain way, or what, and also I don't know yet what that means for the titanium dioxide, grrr, but will post again once I know more.
My platelets are still just hovering around 500. Had a headache yesterday, but remembered to really up my water intake, and take B vitamins and that seemed to help.
Hope this helps you a bit.
Hugs---

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gigi05, thank you for your sweet note!

It seems to me that most people really don't care what others are going through. And even if they have some empathy, a weird blood cancer is way beyond their comprehension. So at the moment you most need support, you feel totally alone.

But here, we do understand, and we do care. You're among friends here.

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@circawdm

Great response!! So much of the time what people see as a new symptom has nothing to do with their medications or even their illness - just the fact that they are aging! 🙂 Glad you are doing OK, and put things into perspective. There are much worse things than hair thinking or fingernail ridges, etc.

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@circawdm . Haha so true. Getting a shocker diagnosis like this, if you watch your brain and thoughts you can easily see how you can get hooked into a certain worry/anxiety, and now every time you have anything, your brain goes, is it platelets???? As a meditator/yoga person, I am used to watching my thoughts, so I'm onto them. And yet, and yet ...

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@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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@nancyra Thank you for your informative post. Fatigue, thinning hair. Skin cancer.
Yes, I use sunscreen, and always wear a hat when out walking or in the garden.
Interesting that anagrelide does not have the same effects like more prone to skin cancer?

I have read that HU can create skin tumors on it's own, besides the sun sensitivity which enhances this. It's because HU damages your DNA. I have not researched Anagrelide yet.
Thanks also for mentioning your age. I'm 67, and just got diagnosed a few months back.
Hugs to you. Please check back in, let us know how you are doing.

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@luvs2dance

I took HU for 22 years and my only side effect was feeling cold. No hair loss or anything else.

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Thank goodness! This would be a new one for me, because all my life I have easily felt too hot, not cold.

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@janemc

"Shocking" is the perfect word for an MPN diagnosis.

And nobody wants to take a chemo medicine every day.

Unfortunately, our bone marrow doesn't care how shocked or reluctant we are. It just keeps churning out too many blood cells, pushing itself towards depletion.

Before HU began to rein in my ET, I woke up with a blinding headache that lasted all day. I was exhausted all the time. I had to pause just walking up a flight of stairs.

For me, HU has really been helpful. From hating those capsules, I'm now grateful for them.

This is not to ignore the problem the dye in the capsules may pose.

Please ask your oncologist for her or his suggestion. HU is in wide use, for sickle cell anemia and some types of mouth cancers as well as for MPNs. With so many people using it, I have to hope it can be dispensed in a form other than the pink and green capsules.

Would you please share what you learn, so others with the dye allergy can benefit?

To me, the pharmacist's "advice" to open up the capsules and mix the HU into applesauce borders on malpractice! NO, NO, NO.

I am so sorry for your diagnosis, gigi05.

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@janemc
Thank you so much for your caring response. It felt so good to read your last statement, 'I'm so sorry for your diagnosis" I'm going to remember that and remember to tell other newly diagnosed folks that. You see, I have not really heard that from people close to me. In fact, they have told me straight up to my face, things like, you don't have a diagnosis, or disease, you (just) have a condition. It's sort of like, what's the big deal, stop talking about it, or stop worrying about it, etc. I understand some people just don't have the emotional skills or empathy, but sometimes you just hope to hear it from those closest to you. So, thank you!
Now about the dyes, I mentioned it in another post just now. But perhaps others are like me, sometimes i cannot find the other posts again.
I spoke with a compounding pharmacist connection, and she told me that she cannot compound it for me and leave all the unnecessary toxins out because HU is so toxic and would need to create a special setup. she told me that there is a white tablet available, and that the dyes are the just in the capsules not in the white tablet. Dont know yet whether the doc needs to write the script a certain way, or what, and also I don't know yet what that means for the titanium dioxide, grrr, but will post again once I know more.
My platelets are still just hovering around 500. Had a headache yesterday, but remembered to really up my water intake, and take B vitamins and that seemed to help.
Hope this helps you a bit.
Hugs---

REPLY
@christina3444

Hello. I’ve been taking 1000mg daily for over 3 years. My hair has gotten thinner but I can’t say if it’s the med or just me getting older. I’ve always had horrible fingernails and nothing, nothing has ever really worked to improve them. They have gotten worse with ridges and vertical creaks but again, is it the Hydroxyurea or old age? I can’t say for sure.
I have always had periodic problems with my stomach since childhood and now I still have them. Again, chronic or age related now? I can’t say.
When I began the course I did look up the list of side effects. All in all fatigue is the problem that is, for me, the most challenging and, again, I cannot say for sure that’s due all or in part to the med. I’ve figured out ways around it all and I’m grateful the PV has not progressed and due, I am sure, in no small part to the med. Now, if they only made a pill for old age!

Jump to this post

Great response!! So much of the time what people see as a new symptom has nothing to do with their medications or even their illness - just the fact that they are aging! 🙂 Glad you are doing OK, and put things into perspective. There are much worse things than hair thinking or fingernail ridges, etc.

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I took HU for 22 years and my only side effect was feeling cold. No hair loss or anything else.

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Hello. I’ve been taking 1000mg daily for over 3 years. My hair has gotten thinner but I can’t say if it’s the med or just me getting older. I’ve always had horrible fingernails and nothing, nothing has ever really worked to improve them. They have gotten worse with ridges and vertical creaks but again, is it the Hydroxyurea or old age? I can’t say for sure.
I have always had periodic problems with my stomach since childhood and now I still have them. Again, chronic or age related now? I can’t say.
When I began the course I did look up the list of side effects. All in all fatigue is the problem that is, for me, the most challenging and, again, I cannot say for sure that’s due all or in part to the med. I’ve figured out ways around it all and I’m grateful the PV has not progressed and due, I am sure, in no small part to the med. Now, if they only made a pill for old age!

REPLY
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