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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vivoconte | @vivoconte | Dec 13, 2024
In reply to @juelie "I am a 69 yo female with no known underlying conditions. Almost 3 years ago I..." + (show)
@juelie

I am a 69 yo female with no known underlying conditions.
Almost 3 years ago I had a routine blood panel done and my platelets were around 1,600. A bone marrow biopsy was done along with genetic testing and they could find no reason for the high count. My doc prescribed hydroxyurea 500mg 1x per day. Through the first 2 years the doc increased my dose to 2 per day for 4 days and 1 per day for 3 days. This seemed to do the trick with lowering my platelets to just in the 400- 500 range with my other blood count varying slightly. I’ve had very few, if any, side effects. About 6 months ago my platelet count rose again to almost 700. I’m now on 2x 500mgs 7 days per week. My most recent blood work showed my platelets down to 358 (yeah!) and my RBC at 2.96 (lower than the low normal of 3.6) and my monocyte % is 11% (higher than the normal range of 8%). My neutrophils are also outside of the normal range at 49%. I’m still lucky to have few symptoms. I did express my concern for the white blood cell differential readings. I am going to decrease my weekly dosage by 2 500mg capsules per week (going from 14 to 12 capsules per week).
I guess my question is, has anyone been on hydroxyurea long term and had increases in platelet count after some time?
Also, I’m seeing significant hair loss. Anyone else and, if so, anything one can do about it?
I’ve also been experiencing leg cramps and swelling in my ankles. I walk, on average, 3 miles per day and also exercise. Anyone else have either/both of these complaints?
I’m so glad I found this group!
Good health to everyone.

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Hola, tengo 42 años y hace 10 qué tomo hidroxiurea. Actualmente estoy con 2 cápsulas 6 veces x semana y 3 cápsulas el día restante.
El cabello desde q empecé a tomar la hidroxiurea ha caído bastante, pero siempre tengo crecí9por lo cuál aunque tengo menos volumen, tengo cabello.
También tengo dolor en las piernas y fatiga constante que generalmente mejora al ponerme en movimiento.
Saludos

REPLY
1 reply
nohrt4me | @nohrt4me | Dec 13, 2024
In reply to @vivoconte "Hola, tengo 42 años y hace 10 qué tomo hidroxiurea. Actualmente estoy con 2 cápsulas 6..." + (show)
@vivoconte

Hola, tengo 42 años y hace 10 qué tomo hidroxiurea. Actualmente estoy con 2 cápsulas 6 veces x semana y 3 cápsulas el día restante.
El cabello desde q empecé a tomar la hidroxiurea ha caído bastante, pero siempre tengo crecí9por lo cuál aunque tengo menos volumen, tengo cabello.
También tengo dolor en las piernas y fatiga constante que generalmente mejora al ponerme en movimiento.
Saludos

Jump to this post

I have been on hydroxyurea for 6 years and have recently had a lot of hair thinning and some leg pain, too. I feel ok, but I do plan to ask the doctor if I could reduce my dosage a little. I notice that you are taking quite a large dose, and I wonder if your doctor has ever suggested reducing it? And, yes, moving around helps me, too! Cheers!

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1 reply
vivoconte | @vivoconte | Dec 13, 2024
In reply to @nohrt4me "I have been on hydroxyurea for 6 years and have recently had a lot of hair..." + (show)
@nohrt4me

I have been on hydroxyurea for 6 years and have recently had a lot of hair thinning and some leg pain, too. I feel ok, but I do plan to ask the doctor if I could reduce my dosage a little. I notice that you are taking quite a large dose, and I wonder if your doctor has ever suggested reducing it? And, yes, moving around helps me, too! Cheers!

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He tomado una dosis más alta aún hasta que por fin mis plaquetas llegaron a 500 y mi hematologo quiere mantener ahora esta dosis para que no suban.
Realmente preferiría tomar una dosis más baja aunque las plaquetas estén más altas ya que he empezado muy joven y me preocupan los efectos secundarios a largo plazo..

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1995victoria | @1995victoria | Dec 13, 2024

I'd rather deal with HU than deal with stroke or heart attack......those sound scary to me......everyone has their own risk tolerance.......all the best....

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1 reply
nohrt4me | @nohrt4me | Dec 13, 2024
In reply to @1995victoria "I'd rather deal with HU than deal with stroke or heart attack......those sound scary to me......everyone..." + (show)
@1995victoria

I'd rather deal with HU than deal with stroke or heart attack......those sound scary to me......everyone has their own risk tolerance.......all the best....

Jump to this post

Yes, if you have to take it, you have to. Just that sometimes dosages can be lowered, but docs don't suggest it if you don't seem too upset. If you say, "I want to be compliant, but this symptom is really getting me down ..." sometimes they'll take a second look.

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pattycz | @pattycz | Dec 13, 2024

I was very much against it, however I didn't want to be that girl who wouldn't give it a go. It is the first line
of defense. Everything following is stronger and worse. It's been on the market 50 years. My symptoms are
manageable. Little stomach issue now and then, diarrhea but all is well. I have one been on it for about 3
weeks. I take the 500s but only every other day. That's a good way to start. Good Luck to you and best
wishes.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 24, 2024
In reply to @mocat47 "77 yr old female , ET, diagnosed 10 mos ago , platelets 940, 000. Started Hydroxyurea..." + (show)
@mocat47

77 yr old female , ET, diagnosed 10 mos ago , platelets 940, 000. Started Hydroxyurea 500 mg daily , first 2 mos platelets decreased dramatically , then plateau’d, added 1 extra capsule/week & platelets dropped to normal. Was also reluctant to start cytoxic agent but no problems & better than having a stroke. Also take daily baby Asa

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Welcome new members @mocat47 and @juelie

@mocat47, I can understand the reluctance to taking a cytoxic agent. Your story demonstrates how not everyone experiences side effects. What a relief that an adjustment to the dosage of hydroxyurea is working for you. Yes, better than suffering a stroke.

@juelie, you might be interested in these related discussions:
- Hair loss with ET and on hydroxyurea https://connect.mayoclinic.org/discussion/hair-loss-5/
- People living with ET and taking Hydrea: Anybody setting records https://connect.mayoclinic.org/discussion/anybody-setting-records/

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stickball1 | @stickball1 | 11 minutes ago

I’ve been on HU for 7 months after being diagnosed with essential thrombocytopenia. Platelet count approached 1000 after open heart surgery. Docs thought it might be a “reactive” response to the surgery. Follow-up tests revealed JAK-2 mutation. Never had a blood (platelet) value issue prior to surgery.
My feeling is I acquired JAK-2 through blood transfusions received during bypass surgery. My hematologist doesn’t think so but didn’t say it was not possible. Anyhow, no side effects from HU except for late day fatigue.

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