1. < Blood Cancers & Disorders

Anyone else find the side effects of Hydrea 500MG frightening?

Posted by eddb @eddb, Oct 1, 2023

I was diagnosed with having a blood cancer that looks and acts a lot like Polycythemia Vera (PV) about 6 years ago. I’ve been rolling along ok with (mostly monthly) phlebotomies, until a year or so ago. At that point my white blood cells and (most importantly) my platelet levels started to increase. The doc did a 2nd bone marrow extraction but I STILL tested negative for PV. After a CT scan and other tests were done to rule out any possible hidden bodily infections, my doc prescribed Hydrea 500 MG. I filled the script about a week and a half ago…and it is still sitting in a bag on my counter, unopened. I got seriously freaked out when I researched the drug and found all those nasty side effects associated with the drug.

Now, I’m sitting here knowing that my platelet count as of 3 days ago was 987 (over twice the normal level limit) and that I could throw a blood clot at anytime. I was holding off taking the drug, to get an appointment with a hematologist/oncologist for a 2nd opinion, but that appointment isn’t for another 10 days - I’m a nervous wreck! I do not want to take the chance with hydrea but I don’t want to clot. I don’t even have a real diagnosis other than suspicion of bone marrow cancer or the beginning stages of it….

I’d be curious to hear about what others have experienced while on this drug. Much appreciated!

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pattycz | @pattycz | Aug 12, 2024
In reply to @nohrt4me "I have heard from other patients that their legs ached bad enough to go to the..." + (show)
@nohrt4me

I have heard from other patients that their legs ached bad enough to go to the ER or call the doc if they were started on too high a dose. When the dose was lowered, leg aching went away. What's too high a dose? Depends on the individual.

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Thank you so very much. I was scared to death.

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nohrt4me | @nohrt4me | Aug 12, 2024
In reply to @pattycz "I just started the hydrox med and ended up in the ER. Has anyone had issues..." + (show)
@pattycz

I just started the hydrox med and ended up in the ER. Has anyone had issues with their legs and terms of aching and inability to walk after taking this medicine?

Jump to this post

I have heard from other patients that their legs ached bad enough to go to the ER or call the doc if they were started on too high a dose. When the dose was lowered, leg aching went away. What's too high a dose? Depends on the individual.

REPLY
1 reply
vivoconte | @vivoconte | Aug 12, 2024
In reply to @pattycz "I just started the hydrox med and ended up in the ER. Has anyone had issues..." + (show)
@pattycz

I just started the hydrox med and ended up in the ER. Has anyone had issues with their legs and terms of aching and inability to walk after taking this medicine?

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Hola, buen día. Lamento lo que te sucedió.
Nunca había escuchado que eso podría suceder por la hidroxiurea.
Yo llevo tomando hace 11 años.

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pattycz | @pattycz | Aug 11, 2024

I just started the hydrox med and ended up in the ER. Has anyone had issues with their legs and terms of aching and inability to walk after taking this medicine?

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3 replies
jacklyn | @jacklyn | Aug 10, 2024
In reply to @loribmt "Aw, Jacklyn, I’m so sorry for your loss of your husband and I can certainly understand..." + (show)
@loribmt

Aw, Jacklyn, I’m so sorry for your loss of your husband and I can certainly understand the impact of returning to the same clinic where your husband had been treated. Situations like that can conjure up a lot of emotions, making it difficult to move along in your own journey. My father passed away in the hospital where I was admitted for 8 weeks. I couldn’t help but think of him during those weeks and long nights. But I also felt his energy there and his spirit of endurance from all the tough times I saw him perserve through adversity. So I really empathize with what you’re feeling every time you open those doors to enter the clinic.

Thank you for sharing this memory of your husband. How long were you married?

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30 years. We were also very close. Thank you for sharing. I guess that is life and you are right my husband too fought the good fight. I do believe they are in a Better place. Peace st last.

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beebo | @beebo | Aug 9, 2024
In reply to @pattycz "I was diagnosed yesterday. I picked up the prescription for the dreaded Hydroxyurea 500 and was..." + (show)
@pattycz

I was diagnosed yesterday. I picked up the prescription for the dreaded Hydroxyurea 500 and was hesitant to take it. I do not want the clots and
I don’t want to wait. I have read on another blog that the side effect vary
from person to person. If I don’t try it I think I will regret it. This is the
only medication for ET for now. I took my first dose today and I’m still here.
Fear is a force that keeps you from making a move. Best wishes.

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I have been on it for about three years now. Currently taking 500mg 4x week. It resulted in my not needing a phlebotomy for more than one year as it seems to be keeping my #’s pretty stable. This treatment is for PV and so far I have not experienced any side effects.

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Mentor
Lori, Volunteer Mentor | @loribmt | Aug 9, 2024
In reply to @jacklyn "Thanks Lori. I should know by now not to try and control everything in my life..." + (show)
@jacklyn

Thanks Lori. I should know by now not to try and control everything in my life especially after I have turned it over to God. You can’t keep taking it back. lol
I also wanted to
Share with you that I am having a hard time going to The Oncology dept. this is the same place my husband ( David) where I took him for his treatments for 1-1/2 for stage 4 colon cancer. My dear David sadly passed away 8 yrs ago and being there has brought it all back to me. The treatments didn’t work for him. I am trying to look at it differently but it’s hard right now. Right after his passing I was diagnosed with MDS. Then my journey started. I never thought I would loose him first. He was 7 yrs younger and never sick. I was the one with breast cancer etc. He was always there for me. I still look for his car sometimes when I come out of Walmart. Still can’t believe it. Thanks for listening.

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Aw, Jacklyn, I’m so sorry for your loss of your husband and I can certainly understand the impact of returning to the same clinic where your husband had been treated. Situations like that can conjure up a lot of emotions, making it difficult to move along in your own journey. My father passed away in the hospital where I was admitted for 8 weeks. I couldn’t help but think of him during those weeks and long nights. But I also felt his energy there and his spirit of endurance from all the tough times I saw him perserve through adversity. So I really empathize with what you’re feeling every time you open those doors to enter the clinic.

Thank you for sharing this memory of your husband. How long were you married?

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1 reply
jacklyn | @jacklyn | Aug 9, 2024
In reply to @loribmt "Hi Jacklyn. You have a great, attentive doctor and when the time is right she’ll reduce..." + (show)
@loribmt

Hi Jacklyn. You have a great, attentive doctor and when the time is right she’ll reduce your level if necessary. The HU has been really successful in reducing the platelet level! Your WBC at 6 (6.000) is just fine. The norm for females is 4,500 to 11,000. So let her do the worrying for you. 😉
You can sleep peacefully tonight with this good news update!

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Thanks Lori. I should know by now not to try and control everything in my life especially after I have turned it over to God. You can’t keep taking it back. lol
I also wanted to
Share with you that I am having a hard time going to The Oncology dept. this is the same place my husband ( David) where I took him for his treatments for 1-1/2 for stage 4 colon cancer. My dear David sadly passed away 8 yrs ago and being there has brought it all back to me. The treatments didn’t work for him. I am trying to look at it differently but it’s hard right now. Right after his passing I was diagnosed with MDS. Then my journey started. I never thought I would loose him first. He was 7 yrs younger and never sick. I was the one with breast cancer etc. He was always there for me. I still look for his car sometimes when I come out of Walmart. Still can’t believe it. Thanks for listening.

REPLY
1 reply
et1055 | @et1055 | Aug 9, 2024

Hi
I have ET and Jak2 mutation.
I have been on HU for 3 weeks.
My platelets July 18 were 1129
Platelets Aug 1 were 993
I have felt very lightheaded with a fluid like swooshing sensation plus very tired.
The first two weeks the area around my lips were numb and tingly but that has mostly subsided.
I am going to stay on HU and hope my body adjusts and the other symptoms subside as well.
I have been on other chemo drugs for ovarian cancer— so HU seems easy compared to those!
I don’t like the idea of taking chemo pills either but I certainly don’t want a stroke🫤

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pattycz | @pattycz | Aug 9, 2024
In reply to @nypara66 "Hang in there! Most patients start off with a higher dose that’s needed and they quickly..." + (show)
@nypara66

Hang in there! Most patients start off with a higher dose that’s needed and they quickly adjust to what is right for you. I have PV and when taking it daily I had some issues. After about six months I’m down to 3X a week and am doing well. It takes time for your body to adjust. My platelets have been just under 500 now for a year and my doctor is fine with that. Give it some time and usually most do very well on this medication. It does its job for sure.

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Thank you kindly and best wishes to you

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