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What are most common side effects when starting HU (Hydroxyurea)?
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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Getting the dosage right takes time.
In the old days, they'd give you 1000 or 1500 mg per day, and you'd have bone pain bad enough to send you to the ER. Now they give you 500 mg to start, but dosages often have to be adjusted up.
In my case, getting the dose right took a year. I started HU 500 mg the same month my mom died, and they were adjusting the dose the year I had to close her estate and clean out her house. I noticed no fatigue. I actually felt better on the HU. But our bodies and attitudes are all diff.
If you are nervous or think you will be too tired, call the office and ask if you could add an extra dose two or three times a week for the next month.
ET progresses slowly and responds to treatment slowly, and that can up the anxiety especially if you want things resolved quickly. And who doesn't?
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6 ReactionsIs your doctor doing blood studies about iron? I had similar numbers to yours although I take HU 4x week. I also take iron supplements 1x day which improved my energy level. I have low iron but not anemic. The fatigue got better for me after being on HU for a year. My doctor does incremental dosing and started low and worked up to 4x week with HU. I also drink a lot of water as the HU makes me very thirsty. Hydration is good for the energy too. Take care!
Karla
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5 ReactionsHi williamsjen,
I understand your concern about the dosing of Hydrea. At least you started low and saw a good effect. I met my O/H once only and she said she was starting me on a “low dose”; however , when I looked that up I saw Hydrea 500mg twice daily is not low does for someone like myself who weighs 108 pounds! I do not want the side effects of Hydrea either! I work also and have an active life I want to keep enjoying.
I really want to know is what is causing my recently diagnosed, for only one month, elevated platelets. I went in to have my very enlarged right ring finger proximal interphalangeal joint re-evaluated by this new insurance I have as it is very enlarged with no pain. Other group did not know the cause or what it was. Other doctors have not been concerned and just say it is arthritis. I have a nonpainful enlarged right sternoclavicular joint also just thought to be arthritis also. Now I am learning that arthritis can cause high platelets and I think that should at least be addressed and assessed as a possible cause for my high platelets before diagnosing that I have Essential Thombocythemia.
I am blessed to have no pain from my enlarged joints and no symptoms from my high platelets. I just want some answers and possible solutions.
Thank you for listening and I hope you get a new doc soon. I think I need some more different opinions on my case also. Also, I have no JAG2 mutation and hope they did check me for MPL and CALR mutations but I am not sure they did and I have no results given for those.
Have a blessed positive day.
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