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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etandme0983 | @etandme0983 | Jan 22 10:17am

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 .

1pearl | @1pearl | Jan 22 1:26am

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

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 .

arlibertarian | @arlibertarian | Jan 21 1:44pm

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

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.

arlibertarian | @arlibertarian | Jan 21 1:40pm

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

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.

cdurbin | @cdurbin | Jan 21 12:45pm

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

👍

janemc | @janemc | Jan 21 6:28am

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

Good for you, preparing to make the best of your appointments! I hope you find a great doctor soon to help you make the best decisions.

ronegeorge | @ronegeorge | Jan 20 3:50pm

My hematologist about 6 yrs ago diagnosed me with primary myelofibrosis at 71 yrs old, after finding elevated platelets (800), JAK2+, and fibrosis in my bone marrow. He wanted me to take HU 500mg/1000mg alternating day to day. I didn't like the feeling I had on the 1000 mg days, so I researched and found that HU comes in a Droxia formulation, which has dosages of 200, 300, 400mgs. (It's marketed for sickle cell anemia.) My hematologist said to take 600mgs/day. I have been taking it for 6 yrs without side effects besides some fatigue. It has lowered my platelets to normal levels, and helped prevent spleen enlargement. My other blood numbers have remained mostly normal, except my LDH is double what is normal. Ron

cdurbin | @cdurbin | Jan 20 2:12pm

In reply to @stickball1 "I’m sorry for your diagnosis. At your young age you have some challenges ahead. Perhaps one..." + (show)

Thank you. You are correct in there may eventually be a way to reverse. My brother is a biochemist, PhD. & started looking into on-going studies once I was diagnosed. He says there are & some are even getting close. Only time will tell.

1pearl | @1pearl | Jan 20 1:50pm

In reply to @cdurbin "Hi, I am 48 & was diagnosed last year with ET- JAK12 positive. My hematologist at..." + (show)

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.

stickball1 | @stickball1 | Jan 20 12:22pm

I’m sorry for your diagnosis. At your young age you have some challenges ahead. Perhaps one day in the near future this mutation can be reversed through gene therapy. It’s interesting that your hematologist says it’s a fluke. True scientists do not believe in “flukes”. There may be many reasons why a gene mutates, they just haven’t been discovered yet. Best of luck to you.

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