I’m 63 year old otherwise healthy male. As a result of lots of itching after showers I went to Doc. Long story short – I have been diagnosed with Polycythemia Vera. Until now, never heard of it. My Hematocrit was 59, my Hematologist\Oncologist started me on weekly venesections which I’m still doing. It’s dropped to 57, 54, 51 weekly and Doc wants me to keep going until I hit 45. Not really sure what happens when, if, I hit 45? So for right now, I’m just doing aspirin and venesections. Interested in learning more about living with Polycythaemia vera (PV) and what the future holds.
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Hello there @SouthJerseyEd, welcome to the forum. I’m so sorry to read of your diagnosis and can empathise as I’d never heard of Polycythaemia vera (Polycythaemia vera (PV)) before I was diagnosed with it in 2023. It’s a lot to take in, right?!
Although we’re all different in how we respond to the Polycythaemia vera (Polycythaemia vera (PV)) and any treatments we have, I was told by my haematologist that the aim is to lower the amount of blood we have as the Polycythaemia vera (Polycythaemia vera (PV)) causes our bodies to overproduce blood cells. Bringing our haematocrit down to below 45 % means we have less chance of clots forming as our blood is thinner at that percentage. Folks without Polycythaemia vera (Polycythaemia vera (PV)) tend to have a haematocrit of about 50 % or less.
I take aspirin like you, plus daily hydroxyurea to disrupt the overproduction of blood cells caused by the gene mutation JAK2 that I have. With my treatment, on months where my blood tests show my haematocrit is lower than 45 % I don’t need phlebotomy. Not this month though—my blood was a mere 0.2 % too thick, so I needed a pint removing! So annoying, especially as I’m in the US and thus have to pay for the bloodletting. Guessing you’re on the East Coast from your username so howdy over there in that time zone, how’s healthcare where you are?
I’d say it’s important to be interested in living with Polycythaemia vera (Polycythaemia vera (PV)) and you’ll definitely find loads of great first-hand experiences around this forum from survivors of Polycythaemia vera (Polycythaemia vera (PV)) and its close relative Essential thrombocythemia (Essential thrombocythemia (ET)). Something I like to share is that my haematologist tells me I am far more likely to live into normal old age and pass away with Polycythaemia vera (Polycythaemia vera (PV)) rather than from it. Hopefully that could feel like a relief for you too.
Perhaps you might like to read the Blood Cancer UK information about Polycythaemia vera (Polycythaemia vera (PV)): Polycythaemia vera (PV) | Blood Cancer UK
Here’s the BCUK information about our family of blood cancers, called Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN)): What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
And forgive me if I assumed incorrectly that you’re in the US but my first h(a)ematologist pointed me towards Blood Cancer United (formerly Leukemia & Lymphoma Society) who are the American equivalent: https://bloodcancerunited.org
Glad you found us @SouthJerseyEd, I hope that nasty itching has decreased or gone altogether. Do let us know how you get on.
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Hi southjerseyed,
I’m on the east coast too, though I look out onto the Med not the Atlantic. Welcome, not that we want to be here. What happens when you get under 45 depends on your treatment needed to get there, and if course your personal circumstances. We are all different and this condition never tires of proving that. For me, and I was awkward ( well my biochemistry not me personally) when they reduced my dosage my numbers remained fine under 45 but my symptoms returned, so I changed medication and my numbers remained good,(38-42 range generally) but my symptoms have almost disappeared completely. It’s possible of course you don’t have symptoms (I hope so), but if you do, in theory they should improve/disappear. In my case once things settled down, that is for me, reduced symptoms and low hematocrit numbers, I have moved to quarterly appointments and blood tests rather than monthly, and I feel a lot better.
Best wishes, Pedro
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You “assumed” correctly 
I am on the East Coast of USA in New Jersey. Thanks for responding. I am learning a lot by reading this forum and other Polycythaemia vera (PV) websites. So far, I’ve gone 4 times (one per week) and I went from 59 to 49. I’ll keep going weekly until I get to 45 and then see what Doc wants to do. I still have fair amount of itching. My Doc has not prescribed anything but aspirin and phlebotomy at this time. I’ll inquire about the Hydroxyurea, does it give you other side effects?
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Pedro: thanks so much for sharing. Other then the bloodlettings, what did your Doc prescribe? I notice others on this forum take hydroxurea. My Doc said let’s do aspirin and phlebotomy for 8 weeks then we’ll re-evaluate and see where we are. My 8 week re-check is Oct 9th. I still have the itching especially after a shower.
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Hi Iam 71 and live on the south coast of England. I went to the Doctors with pains in my feet and hands. After numerous blood test I was diagnosed with polycythemia vera, Essential thrombocythemia (ET), plus jak2 mutation.
My blood count was 0.58. I started with 2 weekly venesection and then Hydroxycarbamide 1gram daily . As my blood count has now dropped to 0.45 the venesection have been suspended. As my blood count continues to drop, the amount of Hydroxycarbamide will be reduced. Three days after starting Hydroxycarbamide I had some bad side affects for two weeks, but now I am feel almost back to normal.
When investigating on the Internet it is very confusing and daunting. As you may have found our conditions are incurable but fairly easily controlled.
The people on the forum will be very supportive and helpful. I am looking forward to long and enjoyable future and so should you. The most dangerous thing for you at the moment is crossing the road without looking.
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Hello again @SouthJerseyEd, glad I wasn’t assuming stuff willy-nilly! I used to live in NYC and had friends over in NJ so perhaps our paths crossed there, small world hey. Really glad to know the forum is being helpful for you too.
I’d say it’s excellent that your haematocrit is around the normal range, that’s how I gauge how my treatment is going. Getting our haematocrit down to 45 % or less feels more of a goal than an expectation—it can be affected by other illnesses like infections around the body, and even what we eat (for example, too much iron-rich food can increase blood cell production).
As you likely know, the main symptom of Polycythaemia vera (PV) is our bodies overproducing blood cells, that in turn can trigger clotting, which is our main risk. Keeping our blood thickness lower decreases our risk of clotting, hence why our haematocrit being lower than 45 % is safer for us. So I’d say from my non-medical observations to try not to feel like you’ve done anything wrong or that the Polycythaemia vera (PV) is worsening on those occasions when you need phlebotomy.
As for hydroxyurea, I’d say for me the side effects it causes are worth it to stay alive into normal old age whilst living with cancer. I didn’t know people could live sort of normally with cancer, or that cancers weren’t all tumours and terrifying physical deterioration. Polycythaemia vera (PV) is considered a chronic form of blood cancer.
But I won’t lie—hydroxyurea is still a form of chemotherapy, and for some people its side effects are too much to tolerate. For others it being “chemotherapy” causes alarm. But there are other cytoreductive medicines, like interferon, that we can take if we don’t take hydroxyurea. You may not even be prescribed any as some people with Myeloproliferative neoplasms (MPN) like Polycythaemia vera (PV) manage well with aspirin and occasional phlebotomy. I get the impression that if we’ve had a clotting event and/or are over 60 then we tend to get prescribed hydroxyurea or similar as we’re considered at higher risk of clotting.
Having had no symptoms prior to diagnosis, I really noticed how hydroxyurea caused extreme fatigue and brain fog in me and it was disabling at first. It really got me down as I was too fatigued to get out hiking or even walking downtown, and I found it really hard to think stuff through. Thankfully those side effects faded over a few months and I’m back to my pre-diagnosis energy.
Others around the forum have shared far worse Polycythaemia vera (PV) symptoms prior to diagnosis, like that horrible itchy skin, and find that once they start hydroxyurea or similar their itchiness decreases. Showering/bathing in colder water is meant to help a little, and using mild soap. Do let your specialists know about any and all symptoms, and if itchiness continues affecting your quality of life then you should make them aware of how disruptive it can be as they can offer other suggestions. Have a look around the forum as you’re sadly not alone in experiencing that horrible itching and others have shared what helps minimise it.
Glad you found us @SouthJerseyEd. Do let us know how it goes in October, and perhaps contact them in advance about the itching as they might suggest ways to decrease it sooner.
Hello there @Steve.H, really glad to read that you feel almost back to normal after those bad side effects from hydroxyurea. Funnily enough I used to live on the south coast too, so greetings to you and my old neck of the woods!
It seems that some of us have to grin and bear it somewhat to feel the benefits of daily chemotherapy. I wish my first haematologist had been more aware/honest about potential side effects, but here we are tolerating them!
Thank you for sharing your experiences too, I read of many other survivors of Myeloproliferative neoplasms (MPN) who swap over to a different treatment due to how grim hydroxyurea can seem, so it’s good to share when it works.
And I agree about how daunting it is finding accurate information about Myeloproliferative neoplasms (MPN) online. Around the forum I often read to avoid checking with Dr Google, and I tend to agree! I try to stick to official blood cancer and Myeloproliferative neoplasms (MPN) health websites written by specialists, easier said than done! Perhaps you have you found MPNVoice helpful?
Hi Southjerseyed
Initially I was on hydroxyurea and aspirin. The short version is that hydroxyurea reduced my haematocrit count and reduced my symptoms but did not eliminate them, at this time I was taking 19x500mg a week. This was reduced to 17 tablets a week when trying to find a therapeutic level ( I couldn’t continu on 19 as other blood counts were getting dangerously low). I started on 2x10mg of ruxolitinib the week before Christmas 2024, within a week my symptoms were less severe than at any time under my previous medication. The itching was the most persistent. I was only able to start showering daily in June as the discomfort/pain had reduced significantly. This last week things have reached the point were the itching is so minor I don’t normally notice it. I hope your itching isn’t as persistent.
Best wishes, Pedro
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