Stopped Hydroxyurea due to anemia....restart?

Posted by mjfp49 @mjfp49, Sep 17 11:47am

Been on HU for ET for almost 9 years. Platelets were in the 800s at time of diagnosis. I have well controlled High blood pressure...that's the only other drug I take besides baby aspirin.
Was up to 5,500 mgs of HU a week.
Platelets were around 280 ...anytime my Platelets creep up into the 400k range we add another pill...always tolerated it well....but this time my doctor added 2 pills then the other blood lines began to show anemia.
Anemia continued for 4 months.
Stopped the HU for a week and anemia is gone.
Meeting with my doctor to discuss where we go from here.
Go back on HU at a lower dose and maybe live with Platelets at high normal range instead of always pushing them back down into the 200k area??
I am 77, female and have never had an issue with the drug or ET.
Just wondering if anyone else had to stop HU, restart it or try another drug.
Thanks

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janemc | @janemc | Sep 18 5:03am

Did you hear, Besremi has been approved to treat ET? For some, this is a better alternative to HU.

Discussing this with your doctor could be helpful.

mjfp49 | @mjfp49 | Sep 18 7:40am

Thanks..I did hear that...but a side effect is depression??
Don't care for any drug that has psychotropic issues.
But will ask.

nypara66 | @nypara66 | Sep 19 7:27am

In reply to @mjfp49 "Thanks..I did hear that...but a side effect is depression?? Don't care for any drug that has..." + (show)

@mjfp49 And it’s extremely expensive!

hun8ln2026 | @hun8ln2026 | Sep 20 9:08pm

I am 78, have ET Jak 2 have bn taking HU for 3 years Dr's just kept adding number of days for me to take HU platelets stayed between 686-715. Decided I needed to see a real specialist for ET. I drove 2 hours this past week to see a new Hemotologist/ Oncologist. He took me off HU and put me on Anagrelide, this will be my 4 th night taking new drug. Only side effects I've had is a slight headache which doctor told me I would probably have. So far I feel like a different person. HU was not for me but I have read post on this site where people did not have a problem with HU. It just was not working for me and I was having side effects. I see this new doctor on September 29th to see if med is bringing platelets down. I'm praying it does, if not I have to take the Besremi shots.

Colleen Young, Connect Director | @colleenyoung | Sep 27 3:51pm

@mjfp49, what did you and doctor decide as next steps?

ssmith464 | @ssmith464 | Sep 28 2:30pm

Any experience with erythropoitin for anemia?

mjfp49 | @mjfp49 | Sep 28 4:46pm

No..but 1 week after stopping HU...anemia gone.
Restarting HU at half dosage.
Will be curious to see how the blood lines are responding.
Hopefully, holding the platelets down while keeping the other lines happy.

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