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

@susita
Thanks , I've had ET with JAK2 Mutation for 9 years.
Starting number was high 800 K.
I'm 77.
HU had never bothered me until this May when it made me anemic.
So took a break and will restart drug after tomorrow 's appointment...I assume.
Stopping drug...anemia was gone in a week.
I don't get why my doc always wants my platelets way down in the 200ks.
I am fine at high normal in the 400 ks.
And take less HU.
We shall see what happens.

@janemcclung
Yes. I wonder because your ET is driven by a different mutation not pushing as hard to drive the platelets down is the protocol.
Will have to look it up
Thanks

@mjfp49

What we're told is all over the place.

You are right, the particular driver may enter into the calculation. Those of us with the MPL driver are the most likely to progress into leukemia. Maybe that's why in the initial visit, my oncologist told me: start taking HU or risk losing your bone marrow.

Or, it may be random, depending on how our oncologist was trained, or what other patients she or he happens to have treated.

It makes you want to scream sometimes.

Agree, Some people only need to take the baby aspirin.
Others need HU .
You need to keep yourself informed and remember this is a mild blood cancer...I heard one hemotologist on a program call ET the " basal cell" of blood cancers...basal cell being the mildest form of skin cancer that does not spread to other organs.
You'll die with it....but not of it.🙏

@mjfp49
My oncologist here in Bend also wants platelets somewhat lower but I just saw more of an MPN specialist in Portland Oregon at a teaching college OHSU. They see a lot more cases and this Dr is well known. He’s fine with platelets in upper 400’s to low 500’s so that’s what I will discuss with my doc here. I have also been experiencing some issues with iron binding capacity etc.

I have ET/JAK2, diagnosed February 2025. I am now 80 years old. The platelet count had been going up slowly since 2021, but my PCP didn't really pay attention to it. After diagnosis I didn't want to start taking HU right away, because I had a quite a big wound on my leg, which took a long time to heal. By December 2025 my platelets were up to ~ 770. I wanted to get a second opinion. The Hem/Onc doctor started me on 500 mg HU 5 days a week. The platelet count was coming down slowly. 500mg HU was added 7 days a week. In the mid April platelets were around 520. Then HU was increased, first 1000mg one day a week, and 500 rest 6 days, and now in the last two - three months I have been taking 1000 mg 2 days a week and 500 5days. Platelets have been the same since April, 512 - 522.
I would like to get them under 500, but I will settle also for low 500. I am also taking low dose aspirin every day.
I don't want to increase HU. I am curious what my doctor says next time I see her.
- Hipsu 🙂

@hipsu5
It seems many doctors are content to keep the platelets in the high 400-500k range.
I take baby aspirin too...have read recent studies show coated baby aspirin is not as effective as a regular baby aspirin in keeping platelets from aggregating.
I found St. Joseph has a non coated, orange flavored chewable baby aspirin...going to try that.
Garlic is supposed to show some ability to naturally bring down platelets.
I take that in a pill form although eating a clove raw is the best way...don't think I can do that. And garlic is a great immune booster.
HU is the go to drug for most of us..it is effective without too many serious side effects.

@mjfp49 my dr is comfortable with a new high normal. He wants to keep them below 600.

@mjfp49
I'm so glad you asked this question, because I'd like to know too.

After I was diagnosed with ET, JAK2 positive, my doctor told me if mine got above 600k I'd have to go on HU, and they eventually got that high. I was taking one 500mg Hydrea capsule daily beginning early this year until my last checkup. I was having some neuropathy which seemed to greatly concern the PA, so she told me to leave the HU off on Saturdays and Sundays. I go back for a checkup on Oct. 2 and hope my platelet count hasn't increased too much.

I'd be fine if my platelets stayed below 600k (because I didn't have to first go on HU below that), but the count has been in the 200s lately and the doctor has been very happy with that. I'd like it a little higher, because my white cell count is at the bottom of normal and my red count is just a bit below normal and I don't want them to drop any further. We'll see what they say next month.

Prayers and best wishes for all who are in this ET club!

@mcsulli they were 520 a week ago which is why he kept me in HU along with Besremi. He likes 400 or under. Besremi is slow to move the numbers at first but HU keeps things more normal as I understand it. I have PV and am age 78 .female. I have been diagnosed for 6 yrs and was on aspirin and phlebs until a year ago when he started me on HU 400 mg once per day and never changed it. Just used phlebs as needed. My JAK has gone from 15 to 68% which is why I’m on Besremi. Targets the source.