What are most common side effects when starting HU (Hydroxyurea)?

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.

@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---

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.

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.

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

"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.

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!

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.