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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@janetbender

Has anyone developed weird thick vertical ridges on their nails?
Could it be ET, HU, age?

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Vertical ridges in the nails are very common as we age.

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@circawdm

Vertical ridges in the nails are very common as we age.

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Could be from thyroid…

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@janetbender

Could be from thyroid…

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OK. If you are very worried about it, show it to your doctor and have your thyroid tests done. It also *could be* rheumatoid arthritis (easy to test for) or anemia (also easy to test for, and I am sure one of your normal blood tests for your condition). I have them, and everyone I know over age 65 has them to some degree. See the doctor. Get the tests. Then you will know, versus worrying. 🙂

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@cdurbin

Glad your BMB didn't hurt & you got a better diagnosis. Mine was very painful & I bruised really bad. I'm a red head so pain meds affect me differently. They used an entire bottle of lidocaine & I still felt it & had cramping in the area for a couple days after.

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Hi cdurbin,
I am sorry your BMB was painful. I must have had an experienced nurse practitioner who did mine with one local anesthetic injection. I know she was sent over from UCSD.
It seems so strange to me that I would still have ET if I had not asked for BMB. That is what my blood work alone showed. I know many others feel that blood work alone is all that is necessary. I have high platelets I know. I have no risk factors according to what is checked on two scales for my new diagnosis of Myelofibrosis. I could tell my O/H was very confused about my particular case. She did not know how my platelets could go down so much on my BMB day and then go back up as well as how my hemoglobin mysteriously went way down BMB day and then went right back up to well within normal like it has always been on lab work. She did offer for me to see a MPN specialist who consults about bone marrow transplants who works at City of Hope here in CA, so I will do that this summer just to learn more and get a second opinion also. In the meantime I don’t mind taking baby aspirin daily and doing lab work monthly. I am very blessed I know to have no symptoms.
Positive thoughts for all.

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@1pearl

Hi cdurbin,
I am sorry your BMB was painful. I must have had an experienced nurse practitioner who did mine with one local anesthetic injection. I know she was sent over from UCSD.
It seems so strange to me that I would still have ET if I had not asked for BMB. That is what my blood work alone showed. I know many others feel that blood work alone is all that is necessary. I have high platelets I know. I have no risk factors according to what is checked on two scales for my new diagnosis of Myelofibrosis. I could tell my O/H was very confused about my particular case. She did not know how my platelets could go down so much on my BMB day and then go back up as well as how my hemoglobin mysteriously went way down BMB day and then went right back up to well within normal like it has always been on lab work. She did offer for me to see a MPN specialist who consults about bone marrow transplants who works at City of Hope here in CA, so I will do that this summer just to learn more and get a second opinion also. In the meantime I don’t mind taking baby aspirin daily and doing lab work monthly. I am very blessed I know to have no symptoms.
Positive thoughts for all.

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My tech was very good but I'm a redhead & pain meds just work differently on most. It takes way more than the normal, lol. I see a hematologist at siteman cancer center in St. Louis who specialzes in MPN's. She told me platelet levels fluctuate. I can usually tell when mine are higher. I experience more fatigue & itchy skin. I have migraines often but they started way before my ET symptoms started. I can't tell you if I have more frequent headaches due to the preventive meds I already take.
Im good with just taking baby aspirin as well & i go every 3 months for labs & visit.

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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!

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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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@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!

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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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@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---

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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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