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

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.

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.

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. 🙂

Could be from thyroid…

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

"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.

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.

I am not sure who had the intial question about bone marrow biopsy. I had disabling trauma from my bone marrow biopsy and when I changed Drs. she said she would not have done it, that it was not needed for the diagnosis. They pounded a spike into me a couple times at the hospital. I had asked for it to be done on my right side because I have had a lot of lumbar issues and pain on my left side. They said whichever side was easier to get to, so they ended up doing my bad left side. I could not walk without sciatic pain for a year or more and it still can bother me when I walk. I went to many Drs. and no real answers. I did my own research and found out that especially for women it can cause periformis syndrome. I had a hip mri and it noted that where my periformis passed the sciatic nerve, with the inflammation it could cause something like that. I did see one sports medicine Dr. that did sonogram down that left side and saw little tears in many places. I was sorry I did it. Blood tests can often show leukemia now, at least some types. I wish I had waited in case it is needed if it progresses. I guess it depends what your blood readings say.

That's good information. Good question to ask: Will the test change anything.
I know what you mean. Shocking to hear the diagnosis. I too am never sick, did not even have an aspirin in the house!, nothing, because I do not take or need to take any medicines. I am eating largely organic, and very health focused, cooking meals daily with fresh non-processed not even frozen ingredients. Everything from scratch. No additives, no food coloring. The whole prospect of a medicine for life, with dyes at that, and maybe even no control over whether to eliminate the coloring, a toxin in my mind -- shocking. I am diagnosed with ET, possibly changing into PV.

I can’t recall where I looked it up. Mostly hospital sites. My main question was how will the results affect my treatment? If they are using our monthly labs to dictate which meds and how much to take, I asked
Why is it necessary? Basically he told
Me straight forward that the test would not change my treatment. As long as I can control my hematocrit and platelets with the hydroxyurea, 3X a week now for almost two years, and phlebotomies every few months(when hematocrit is over 45) treatment remains the same. So basically they give you the choice for final confirmation of the disease. I’m JAK2 positive and diagnosed with PV soley from bloodwork. It’s a personal decision. I was 56, NEVER sick or taking any medications, so I was shocked. But… wasn’t letting them make me go through that and pay for it also if it wasn’t going to change anything. Every person’s situation is different. Speak to your doctor and think on it.