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

Will continue as is and hope for the best.

lea123 -- what you've been through is shocking, but thank you for sharing your horrible experience. I am sorry the procedure did you so much harm.

"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.

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

Could be from thyroid…

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. 🙂

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.

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.

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!

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