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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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arlibertarian | @arlibertarian | 1 day ago
In reply to @janemc "Thank you for the link to this helpful article. It contains a lot of important information..." + (show)
@janemc

Thank you for the link to this helpful article. It contains a lot of important information we all need to learn.

Please note, it doesn't mention using HU for ET. Perhaps dosing is different for our cancer?

After my ET diagnosis, I first took one 500-mg capsule of HU a week. To push my platelet count down from the 700s, gradually my oncologist increased my dosage to the current level, 10 a week.

My weight has not changed.

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I don't know your weight, but it would make sense that you'd start with a minimal dose, then increase as needed.

In my case, it worked out to up to 1800 mg a day. I had side effects at 1500 a day, and we switched to Jakafi.

Good luck to you.

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arlibertarian | @arlibertarian | 1 day ago
In reply to @1pearl "Thank you so much for your reply. My doctor is insisting on Hydea but I have..." + (show)
@1pearl

Thank you so much for your reply. My doctor is insisting on Hydea but I have not started it. I agree to just take baby aspirin first. My primary whom I have never even met is insisting on liprinosil which I have not taken either as my BP is totally normal when I take it out of the doctor’s office. I have a detailed log to show her when I finally meet her this Friday. I did write myself a SMART goal to help me keep calm when I am there in the office which I am doing this week to hopefully be able to just relax there. I know I feel very anxious being there as I do not feel comfortable with the quick way all these meds were decided for me and previous experience with doctors there for my mom, dad, and daughter. I know I had a ton of labs done there recently and I am not an expert, but I do know me on my BP and did see my own BP machine read the highest I had ever seen it when they had me use to measure after they did twice. I am afraid at home I might actually faint as last night when I took my BP, it was 104/53. Normally it is not that low, more like 112/70, but it only takes one time to faint and fall and get a bigger issue right now.
You were fortunate to get a doctor who listened to you.
Thanks again for sharing.

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Yeah, my BP was lower at home too.

Then I took my BP machine with me and compared to their expensive, calibrated, accurate one. Low and behold, my cheapie Chinese internet bargain BP machine was reading 15% lower.

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1 reply
1pearl | @1pearl | 14 hours ago
In reply to @arlibertarian "Yeah, my BP was lower at home too. Then I took my BP machine with me..." + (show)
@arlibertarian

Yeah, my BP was lower at home too.

Then I took my BP machine with me and compared to their expensive, calibrated, accurate one. Low and behold, my cheapie Chinese internet bargain BP machine was reading 15% lower.

Jump to this post

Hi arliberatarian,
I just got my new BP machine this afternoon. So far I haven’t seen any significant difference in my old and this new machine’s measurement, both normal. I will know more tomorrow when I use it more. I do not care for the talking feature of the new machine. The voice should be more pleasant.
Are you on med for hypertension? If so, which one? Obviously, I will take BP med if necessary.
Thanks for sharing .

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etandme0983 | @etandme0983 | 5 hours ago

I have been on 500mg/day for 3 weeks and have noticed no side effects at all. I am taking Biotin , 5000 mg/day to hopefully help with hair loss , and to strengthen skin and nail issues if they arise . I’m also on 1 aspirin/day . I had already started having mouth sores , a few severe headaches, and fatigue since this past summer , and now they are all gone. I have a lot more energy as before , I was too tired to even go out of the house . Also for dry skin, I found an amazing product , Dr .Teals bath and body Oil. I was like you ; very scared to take HU because I read on this blog so many people have had side effects , but our bodies are all different and this beats worrying about strokes . My Oncologist/Hematologist wants to lowers my platelets ( last blood draw 650) to 400. We are all here for you ! Stay strong .

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