Effectiveness of HU on ET w/MPL?

Posted by johnnychips @johnnychips, May 24 10:11am

I was diagnosed with ET & MPL 2 months ago, platelet count of 850 and the doctor started me on HU 500mg, 3 pills a week (M, W, F). After one month, platelet count was 716, so he increased dosage to 7 pills a week (one each day). Two weeks later, platelet count was 699, so he increased dosage to 11 pills a week (two each day, except M/W/F with only one). Three weeks later, platelet count was 675, so he increased dosage to 14 pills a week (two each day). That brings us to the present. So, after two months altogether from the start of the diagnosis, platelet count went from 850 to 675. I became discouraged as I thought HU would bring the platelet count lower and faster. It is going in the right direction but it is still high.What realistically should my expectations be? What is everyone else's experience in terms of the amount of time it took to get the count to less than 400? Would appreciate some feedback on this. Thanks!

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johnnychips | @johnnychips | May 26 1:31pm

In reply to @mdramsey48 "@johnnychips I was dx with breast cancer a month after being dx with Jak2ET. I had..." + (show)

@mdramsey48 Thanks for the feedback. Good luck with the anagrelide journey, hopefully that would suit you best with less side effects.

johnnychips | @johnnychips | May 26 1:33pm

In reply to @krag1949 "Don’t know if this helps I was diagnosed in Nov 2025. I take 2 HU one..." + (show)

@krag1949 What was your platelet count when you began with HU?

krag1949 | @krag1949 | May 27 10:02am

before starting HU WBC was 32.4. Platelet count was 852, my journey started in July of 2025 when it was supposed I had infection from hardware following reconstructive foot surgery in July of 2024. After infusions of antibiotics it was noted WBC went sky high, antibiotics not helping. Referred to Hemo /oncologist. Diagnosed with essential or reactive T. Looking at Hemo notes the word ambiguous was used which makes me wonder if all of this is still coming from the foot, which right now needs ankle replacement surgery. Who knows????

scienceteacher | @scienceteacher | May 27 2:56pm

I started HU in November. My count at that time was around 600 but while I was in rehab from a broken hip and ankle prior to that it reache 1,800. The count has slowly gone down to right at 400. I don't want to take more HU because my RBC count and hemoglobin have been decreasing and have not yet leveled off.
Everyone's body is different so keep the faith.
Best wishes for continued platelet decrease.

johnnychips | @johnnychips | May 27 8:07pm

In reply to @scienceteacher "I started HU in November. My count at that time was around 600 but while I..." + (show)

@scienceteacher Thanks for sharing. Good luck on your end as well.

janemc | @janemc | May 28 6:19am

In reply to @krag1949 "before starting HU WBC was 32.4. Platelet count was 852, my journey started in July of..." + (show)

@krag1949

REACTIVE ET, in response to trauma such as surgery, is certainly possible. I don't know how long reactive ET persists.

ESSENTIAL ET means one of the three proteins regulating blood production has gone wonky (unless you're TRIPLE NEGATIVE, the biggest mystery of all). Essential ET's a lifelong condition.

Do you know, has an abnormal driver (JAK, CAL or MPL) ever been found in your blood work?

eloise999 | @eloise999 | May 28 6:47am

In reply to @scienceteacher "I started HU in November. My count at that time was around 600 but while I..." + (show)

@scienceteacher you may just need to reduce your dose

scienceteacher | @scienceteacher | May 28 10:21am

In reply to @eloise999 "@scienceteacher you may just need to reduce your dose" + (show)

@eloise999 Thank you for your thoughts on that. I had considered that but my Oncologist seems to think my hemoglobin and RBC count will level out.
Because of my age, 71, I am at a higher risk for a stroke so I need to keep the platelet levels at or below 400. I am on one HU capsule four days a week so I would need to make a large percentage change in my dosage to reduce that.

krag1949 | @krag1949 | May 29 5:54pm

In reply to @janemc "@krag1949 REACTIVE ET, in response to trauma such as surgery, is certainly possible. I don't know..." + (show)

@janemc I looked back at my assessment as of April 27th, myeloproliferative disease with thrombocytosis Jak2 and SF3B1. My hemo is treating me like I have essential thrombocytosis, although it was noted diagnosis was somewhat ambiguous, close monitoring of disease for signs of transformation to either myelofibrosis or MDS. This is all I know so far.

janemc | @janemc | May 30 4:42am

In reply to @krag1949 "@janemc I looked back at my assessment as of April 27th, myeloproliferative disease with thrombocytosis Jak2..." + (show)

@krag1949

The presence of that JAK mutation clarifies that you have essential, not reductive, thrombocytosis.

For anyone, ambiguity about what else may be happening would be really stressful.

It's so easy to think the worst. Would you please remind yourself, you're doing everything right to get your platelet count down? That also means you're doing everything right to shore up your bone marrow against progression.

To better days ahead.

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