1. < Blood Cancers & Disorders
Profile picture for mjfp49

Hydroxyurea causing mild anemia

Posted by mjfp49 @mjfp49, 3 days ago

Hi , diagnosed with ET been on HU for nearly 9 years to control my high platelets.
Anytime my platelets creep back up to over 400k my Dr. adds a pill.
For the 1st time I now have mild anemia.
2 questions: do you eventually adjust to the increased dose and best ways to up the RBC .
I have never had symptoms of ET and HU has never bothered me.
Have no symptoms of anemia either.
Anyone else experience this?
Thanks, MJ

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

Profile picture for krag1949
krag1949 | @krag1949 | 1 day ago
In reply to @mjfp49 "Hi krag1949, Thanks for sharing your experience. I wish you all the best. I have found..." + (show)
Profile picture for mjfp49 @mjfp49

Hi krag1949,

Thanks for sharing your experience. I wish you all the best.
I have found ET pretty easy to live with for 9 years now and I hope you will feel the same way.
How high were your platelets when you were diagnosed?
Mine had hung around in the middle 400k for nearly 2 years and then jumped to 700k...that's when I had to see a hemotologist.
I have the JAK2 gene mutation.
Never had an issue till now when the Dr. upped it by 2 pills and now dropped one pill.
I know the platelets want to push back and climb again but it usually takes over a year before it hits the 400k mark.
I am hoping my other blood lines will adjust and move back to the low normal range...but I also know the platelets will slowly climb too.
That's the dance we do.

Jump to this post

@mjfp49
When first diagnosed in Oct. 2025 platelet count was high 800k. I too have JAK2 gene mutation. My platelet count now hangs around 350 to400k. My hemo does not want to lower dosage of HU. You are so right it's like doing a dance to keep it all balanced. So glad to know you have been on HU for 9 years.with no major problems. Keep in touch!!!

REPLY
Profile picture for mjfp49
mjfp49 | @mjfp49 | 1 day ago

Will do.
Hope all goes well for you.
I will see my doctor in mid September to see how the anemia is...usually see her every 3 months but this time she said come back in 2.
It's good to chat with folks who have the same issue...more helpful sometimes than a doctor visit.😁

REPLY
Profile picture for ladyplumber7
ladyplumber7 | @ladyplumber7 | 8 hours ago

Get a second opinion, as sometime and if your jak2 positive there are medication that just work on the jak2 to lower platelets, hu has long term effects , alot of medication do, i can't deal with large clinic because they look at ever person the same and i'm not, i live in this body and i know how i feel and i have other high risk problems, if you have been on hu for 9 years and that is the only side effect you have, you are very lucky, they should just take you off for a couple of days or meds every other day, so see if the white cells come back up.. check with a doctor before doing anything.

REPLY
Profile picture for mjfp49
mjfp49 | @mjfp49 | 5 hours ago

Thanks I'll look into other meds.
And best of luck to you.

REPLY
Profile picture for darryl12000
darryl12000 | @darryl12000 | 3 hours ago

I have polycythemia Vera , which causes high hct and high (which is basically the opposite of anemia). When I see my hematologist, he adjusts my HU dosage so that all of my blood levels are stable , meaning not too high or too low. HU is a very powerful drug so I completely understand when you say that things can change too much. I let my doctor make the call. I’ve been on the med for about 2.5 years and it’s working beautifully, no side effects whatsoever from day one. But with any medication, be sure to stay in close contact with your specialist to make sure all of your numbers are in line

REPLY
Please sign in or register to post a reply.