1. < Blood Cancers & Disorders
Profile picture for eddb

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!

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Profile picture for mw2023
mw2023 | @mw2023 | 1 day ago
In reply to @sistersandy815 "I have been on Hydro for almost 10 months. All of my bloodwork is within range..." + (show)
Profile picture for sistersandy815 @sistersandy815

I have been on Hydro for almost 10 months. All of my bloodwork is within range but I experience extreme fatigue, brain fog and shortness of
breath as well as short term memory loss. My legs feel so heavy. I don’t know if it’s the HU or the PV (I am also JAK2 positive), but my life is greatly reduced. They put me on Jakafi briefly but my liver became inflamed so I went back to HU. No phlebotomies for nine months now and no need. Each individual has their own experience but mine is positive for the HU and a big NO. For Jakafi.

Jump to this post

@sistersandy815
I have same type symptoms and/or side effects. PV diagnosed June 2025 and taking aspirin for years but added HU 500mg daily after diagnosis. But I don't feel positive about HU since it has greatly impacted my life negatively. Like you, my blood counts are great but that sure doesn't make me feel better. Have you asked about reducing HU doses? I told hematolagist that I needed to have 2 days off per week because of driving to doctor appointments. He wasn't happy but agreed to take HU 3 days in a row and off 1 day and continue that sequence. My last 2 monthly blood labs after this change have been fine and my 3rd one is next week. If blood labs are still normal range, I will ask for another day off. If they start to increase over normal range, I will add back 1 weekly dose. How do you feel so positive when daily life is so hard to tolerate? I can't meet friends for lunch, can't take a vacation, can't shop without holding on to a cart, can't help with grandchildren , can't have family dinners or entertain. I have to see dermatologist every 3 months because of basil skin cancer and melanoma, both ok after surgeries.
I'm glad you can still feel positive and I'm trying to get there also.

REPLY
Profile picture for gigi05
gigi05 | @gigi05 | 22 hours ago
In reply to @1995victoria "The only side effect I've had to deal with, was avoiding sunshine. It apparently makes you..." + (show)
Profile picture for 1995victoria @1995victoria

The only side effect I've had to deal with, was avoiding sunshine. It apparently makes you more vulnerable, I've notice more "freckles" on my hands exposed to sun. The first year my gut wasn't happy, had very soft BM, but it's finally adjusted. Of course I take HU because I'm more afraid of a stroke or heart attack.

Jump to this post

@1995victoria
Thanks for sharing. Yes, HU may be better than stroke or heart attack.

REPLY
Profile picture for 1pearl
1pearl | @1pearl | 15 hours ago
In reply to @janemc "@ebertolis It's natural to worry and dwell on the worst possible outcomes. Maybe you can balance..." + (show)
Profile picture for janemc @janemc

@ebertolis

It's natural to worry and dwell on the worst possible outcomes.

Maybe you can balance the times of anxiety by finding something that gives you solace?

It could be something as simple as remembering, you've had great success lowering your platelet count. Every dose of Hydrea has helped your bone marrow -- and that's the best possible defense against progression to leukemia.

As you wait for your mid-July appointment, please do something nice for yourself every single day.

And please let us know how you're doing.

Jump to this post

Hi @janemc,
You are very lucky that your oncologist/hemotologist told you that Hydrea helped your bone marrow. Both the oncologist/hemotologist and bone marrow transplant specialist I saw last year when I had Kaiser insurance told me that Hydrea did nothing to protect bone marrow. It just reduces blood cell counts and my platelets went down by 400 with me taking nothing! Maybe that is why I never considered taking Hydrea and will not ever take it. The bone marrow transplant specialist said I was in no need of a bone marrow transplant when he saw me and was not sure if I ever would need one. I will see a true MPN specialist soon since I changed my insurance 1/2026 and my new primary doctor honored my request to see the head MPN specialist at UCSD for the CALR mutation I have. (Kaiser has no MPN specialists.) I am looking forward to finally seeing one and blessed that I feel fine with no symptoms as I always have.
Happy 4th July long weekend to all!

REPLY
1 reply
Profile picture for janemc
janemc | @janemc | 14 hours ago
In reply to @1pearl "Hi @janemc, You are very lucky that your oncologist/hemotologist told you that Hydrea helped your bone..." + (show)
Profile picture for 1pearl @1pearl

Hi @janemc,
You are very lucky that your oncologist/hemotologist told you that Hydrea helped your bone marrow. Both the oncologist/hemotologist and bone marrow transplant specialist I saw last year when I had Kaiser insurance told me that Hydrea did nothing to protect bone marrow. It just reduces blood cell counts and my platelets went down by 400 with me taking nothing! Maybe that is why I never considered taking Hydrea and will not ever take it. The bone marrow transplant specialist said I was in no need of a bone marrow transplant when he saw me and was not sure if I ever would need one. I will see a true MPN specialist soon since I changed my insurance 1/2026 and my new primary doctor honored my request to see the head MPN specialist at UCSD for the CALR mutation I have. (Kaiser has no MPN specialists.) I am looking forward to finally seeing one and blessed that I feel fine with no symptoms as I always have.
Happy 4th July long weekend to all!

Jump to this post

@1pearl

I'm so glad you're doing great!

This is yet another example of why an ET diagnosis is so diabolical.

I hear one thing from my oncologist . . . others hear something else entirely.

Utterly confusing.

To me, what I heard makes sense: manic overproduction of platelets strains bone marrow. With HU, the stress on the bone marrow is reduced.

Without intervention, the bone marrow is depleted. And the success of a bone marrow transplant is far from assured.

How long will it be before MPNs are truly understood? Not in my lifetime, I'll bet.

REPLY
1 reply
Profile picture for 1pearl
1pearl | @1pearl | 9 hours ago
In reply to @janemc "@1pearl I'm so glad you're doing great! This is yet another example of why an ET..." + (show)
Profile picture for janemc @janemc

@1pearl

I'm so glad you're doing great!

This is yet another example of why an ET diagnosis is so diabolical.

I hear one thing from my oncologist . . . others hear something else entirely.

Utterly confusing.

To me, what I heard makes sense: manic overproduction of platelets strains bone marrow. With HU, the stress on the bone marrow is reduced.

Without intervention, the bone marrow is depleted. And the success of a bone marrow transplant is far from assured.

How long will it be before MPNs are truly understood? Not in my lifetime, I'll bet.

Jump to this post

❤️

REPLY
Please sign in or register to post a reply.