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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@gigi05

You ask an interesting question--why would we want to poison ourselves with some blue and green dye? I have not started taking my Hydroxyurea yet, and did not look at the medication yet. I did not start my meds yet because I too am a bit concerned about the side effects, and also, I have never had anything 'wrong' with me, and never even take an aspirin, so this diagnosis plus the drugs to take for treatment are a bit of a shock. I am very health conscious and never consume anything that has a dye in it. I'm wondering why you cannot have it compounded or put in a different capsule at a compounding pharmacy. I would love to know if and how you resolve this.

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Will continue as is and hope for the best.

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@lea123

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.

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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.

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@gigi05

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.

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"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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