What acceptable level of platelets do you shoot for on HU?

Posted by mjfp49 @mjfp49, Sep 19 3:42am

Hi, I read that a number of people say their doctor is content if the platelet count is in the high 400k or even 500k range on HU at a lower dose.
Is it really necessary to push the platelets as low as they can go on a higher dose?
Everyone seems to do a different dance with the drug depending on the doctor.
What's your experience?

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

cindyem | @cindyem | Sep 30 8:22am

In reply to @cetzler "I was recently diagnosed with ET with the JAK mutation. My platelet counts were upper 500s...." + (show)

@cetzler
Keep up with the monthly blood draws and watch your platelet and other values. Platelets can vary that much. Asprin only works against their ability to clot not to decrease them.
Until you have other symptoms you have every right to hold off on treatment.

janemc | @janemc | Sep 30 8:23am

In reply to @cetzler "I was recently diagnosed with ET with the JAK mutation. My platelet counts were upper 500s...." + (show)

@cetzler

Maybe you could ask your hematologist if you could wait to see what the platelet count is on your next blood draw? Or ask her or his reasons for advising HU now?

Unfortunately, ET care isn't one-size-fits-all. HU works great for me, because by bringing down my count, it relieves the horrible ET headaches and fatigue.

But only you and your hematologist can decide what's right for YOU.

arti4 | @arti4 | Oct 1 8:44am

In reply to @cetzler "I was recently diagnosed with ET with the JAK mutation. My platelet counts were upper 500s...." + (show)

@cetzler
I’m 73 and was diagnosed 4 yrs ago with ET, Jak2. My platelets were in the 400’s, and an oncologist tried to put me on Hydroxyurea right away. I balked at that, and found an MPN specialist who said I could wait till the platelets hit 600 before starting that, and recommended 2 low-dose aspirins for the time being.
My platelets have been rising a bit over the years, but still not on the HU. I suppose at some point it would be wise to take it, but I’m not there yet.
It seems the medical community as a whole is not really “up” on the MPN’s and we need forums like this to sus out things for ourselves. Everyone is different, health and history-wise, but that’s my story.
Blessings to you!

hariom1961 | @hariom1961 | Oct 1 10:15am

In reply to @cetzler "I was recently diagnosed with ET with the JAK mutation. My platelet counts were upper 500s...." + (show)

@cetzler
Take a second opinion and your platelets count not so high that HU be started . It’s just my opinion but check with your drs then do accordingly
There have been cases of body getting used to platelets count around 6 lacs and without medicine with no harm . Feel once HU starts , our body’s dependence increases and then stopping may not be easy
Me 65 year old male on low dose HU for last four years and count is around 6.5 lacs and trying to find out a way that HU be stopped but my dr says NO clearly

mjfp49 | @mjfp49 | Oct 1 11:06am

Will be curious...restarting HU at a lower dose and its effect on the platelets and the other blood lines.
Sometimes a break from a med is helpful...we shall see.

mjfp49 | @mjfp49 | Oct 1 11:09am

In reply to @arti4 "@cetzler I’m 73 and was diagnosed 4 yrs ago with ET, Jak2. My platelets were in..." + (show)

@arti4
So true...I think overmedicating on HU is not necessary to keep the platelets at high normal or slightly above normal.
No need to push the platelets down into the 200ks. In my opinion.
Thanks for sharing.
So true most Doctors don't know much about this rare blood disorder.

nypara66 | @nypara66 | Oct 2 6:22am

In reply to @mjfp49 "Will be curious...restarting HU at a lower dose and its effect on the platelets and the..." + (show)

@mjfp49 The few times I lowered my dosage, platelets had risen and well as my red cells so I had to increase it back sadly.

mjfp49 | @mjfp49 | Oct 2 8:22am

Yes, I know that dance.
Trying to control the platelets while not depressing the other blood lines.
Best to you.

cetzler | @cetzler | Oct 3 7:50am

In reply to @cindyem "@cetzler Keep up with the monthly blood draws and watch your platelet and other values. Platelets..." + (show)

@cindyem thanks for your words of confirmation! Yes, I am hoping my doctor will be willing to monitor me without continually pushing me to start Hydroxyurea

cetzler | @cetzler | Oct 3 7:56am

In reply to @janemc "@cetzler Maybe you could ask your hematologist if you could wait to see what the platelet..." + (show)

@janemc thanks for your reply! I am having no symptoms so I am hoping with a good exercise and diet and keeping the count under 600 or 700 maybe I can stay off the Hydroxyurea with just the baby aspirin

View More Return to first page

Please sign in or register to post a reply.