Started Hydroxyurea: How long to see decrease in counts?

I was diagnosed with CALR Exon 9 Essential Thrombolysis. My platelet count was elevated to 650. Doctor put me on 500 mg HU, seems like the go to meds for this. Its only been approx. 2 weeks of taking med. When I get up in the morning I can hear my heartbeat mostly in my left ear pounding , it seems to go away after an hour or so, but I can still hear it through out the day here and there. Does anyone know or have that also? Also its summer of 2026 I was wondering how come I see no more post after 2024? Also I guess we are the lucky ones? I hear that in The U.S only approx. 5000 diagnosis a years for these type of blood disorders. OBTW I am 70 years of age. I would like to know if people on this thread would put their ages when they had been diagnosed.

Just wanted to share my personal story. I have triple negative ET. After HU (1000mg daily) was not doing much good (platelet count >700000), I switched to Besremi, 200mcg every two weeks this February. Besremi has been working effectively for me. Platelet counts started dropping after 2nd dose. My platelet count has been trending down and in the normal range now. Side effects are limited too. Hgb and WBC level was low and this had some negative on my cycling performance. And now it seems being stabilized. I also have itchy scalp and skin on the legs. The two week interval of self administration under the belly skin works well for me too. Besremi seems tackling the underlying allele mutation by reducing it for which this address the issue from the root. With the data trend, there seems a possibility for reducing the dose soon. In general, Besremi has worked for me pretty well considering the struggles I had with HU. I am very grateful. Please let me know if anyone needs any information.

@stevie123

May I ask, are you also taking daily low-dose aspirin? If so, the aspirin's thinning your blood. And thinner blood flows faster. That might be contributing to the pounding you're hearing in your ears. For me, the sound is more like ringing.

I'm not troubled by this! It reminds me that aspirin is helping my platelet-heavy blood to circulate.

Yes, ET is quite rare. Other than here, nobody has any idea what you're talking about, right?

I was diagnosed with ET, MPL-driver, at 69. I'd had elevated platelet counts for three years. My PCP said it was nothing to worry about. Totally ignorant of MPNs, he said my headaches and exhaustion were just part of growing older.

Thank goodness, my oncologist knew otherwise.

Thank you all. I'm 74, have been on HU since 65, hiked 6 miles in the mountains yesterday with friends, kayaked a couple weeks ago, and so on. However my latest blood work shows the ET may be progressing (boohoo!!) so my amazing hemo/oncologist changed the dosage back to 1 pill 500mg a day, (from 2), and we'll see how high the platelets get and go from there. I'm just hoping I can avoid nausea that may come if I have to take another medication (Besremi may work?...I have no idea) and I can keep exercising to stave of the increasing fatigue at times, and stave off progression to myelofibrosis and maybe AML. Oddly I had 1 cousin who had ET who died after 10 years, but she was overdoing work and that was 10 years ago. I tend to overdo activity, too, but there's some kind of pressure to live it up while I can too! I'm just going step by step, and hoping I stay healthy enough to care for husband 6 years older who's in poor health but sort of OK for now. (been with him 50 years) Living fully as long as we can! Be well everyone, and thanks for sharing here. It really helps to know we're not alone.

@wisdom15

You're an inspiration, wisdom15! Making the most of today is what counts.

But no matter how brave you are, it's tough to get "off" numbers. I'm so sorry.

Newly-approved Besremi may be just what you need.

Would you please keep us posted on how you're doing?

I am 70 and was diagnosed with PV in 2022 and was put on aspirin and have been able to keep my Hct under control with phlebotomist every 3 months. This year however my platelets and WBC started to rise so now under the care of an MPN specialist and started HU 500mg for 6 days and 1000mg on 7th day two weeks ago and My platelets went down to normal in by end of the two weeks!! Will see what the counts are in 3 weeks. So far no side effects🙏🏻

Welcome to Connect, @piedad It sounds as though you’re having an encouraging response to the HU for your PV. That may mean the end to your phlebotomies. I bet you won’t miss that. ☺️ It’s great to hear you’re not having any side effects with the HU.
Some patients say they have fatigue depending on the time of day they take their meds. Do you take your HU in the morning or at night before bed?

@stevie123 Regarding posts from 2024: Your filter (under the page numbers) may be set at oldest to newest rather than newest to oldest. That seems to be the default and I found that to be the case when I first got in here too.

I’m 73 and have been on HU for 30+ yrs for ET. I’ve told much of my health story (nothing has negatively affected how I live my life) previously so I won’t repeat but maybe you can find it by clicking on my name. Anyway, yes, many share their ages (both current and when diagnosed), experiences, test results and treatments as well as their concerns. I’ve shared more based on what I’ve seen others do. One of the most encouraging comments someone else shared here goes something like “ET is a disease/disorder people die with, rather than die of.” I find that very encouraging and I hope you do as well. BTW I’ve never experienced hearing my heartbeat as you described.

@loribmt …..I take it about half hour before bedtime. Personally phlebotomies never bothered me since they were months apart and that’s why I held off from starting HU but when the platelets went up I realized preventing a stroke had to be my main concern! I just which HU could change the progression of the disease like some other treatments. .