I was diagnosed with Polycythaemia vera ('PV') late 2025. I’d been feeling really fatigued for best part of a year and couldn’t understand why.
The catalyst to finding it, was after I had a major vision problem and a massive headache driving home one night; an A&E visit, which classed it as a cluster headache and sent me home with abnormal blood results, followed by 2 weeks waiting for a doctors appointment that never happened. My wife then happened to show a haematology consultant a snapshot image of my blood results, who rushed me in first thing on a Saturday and so began testing, a biopsy and weekly venesections.
It’s taken about 3 months of pretty much weekly venesections to get down to my target blood level and have now not needed a venesection for around 8 weeks, woohoo.
I don’t really know how I feel about having Polycythaemia vera ('PV'), generally ok, and I guess I’m at a stage where I’m trying to workout whether what I’m feeling is due to having Polycythaemia vera ('PV') or not!
There’s the odd day, where I feel absolutely wiped out and seem to get occasional aching feelings in my bones too, is that expected?
Hello there @Zim, welcome to the forum from one survivor of Polycythaemia vera ('PV') to another. I’m so sorry to read of that horrible headache that took you to hospital, I’m sure that was worrying enough before the overall diagnosis.
Although I’m not a doctor, it sounds like your blood must be thin enough not to need venesections. Good stuff, that’s what I aim for. My haematologist says he wants to free me from phlebotomy, sounds like you’ve had a break for a couple of months. I celebrate when I don’t need it too!
From my understanding, fatigue is very common with Polycythaemia vera ('PV') due to both the disorder itself and the effects of treatment. Having blood removed will take the bonus blood cells but also ones that aren’t elevated, which can lead to anaemia. Perhaps you could let your haematologist know about the fatigue and aches, they might advise being tested for iron levels. I know another forum member who had iron transfusions for his anaemia, just an idea.
As for bone pain, unfortunately that can occur with MPNs like Polycythaemia vera ('PV'). With some people it’s gout. I had achy former injuries return, like tendinitis. Maybe you’d like to read this information from Blood Cancer UK about Polycythaemia vera ('PV') and its potential symptoms: Polycythaemia vera (PV) symptoms | Blood Cancer UK
I’d say pass any and all new or different symptoms you experience onto your specialist so they know too, especially at this early stage after diagnosis. My haematologist seems glad to receive my various updates! Some people with Myeloproliferative neoplasms ('MPN') like to keep track via the MPN Voice app or Myeloproliferative neoplasms ('MPN') tracker: https://uk.mpn.your-symptom-questionnaire.com
Do have a further look around the forum @Zim, you’ll find many of us living with Myeloproliferative neoplasms ('MPN') like Polycythaemia vera ('PV'), Essential thrombocythemia ('ET') and Myelofibrosis (‘MF’). Use the search box at the top or Related Topics below to find other threads that may be of interest. I look forward to hearing how you get on!
Many thanks for your reply Duncan, actually great to hear from someone else with Polycythaemia vera ('PV') and to read from others on the site. Thank you
You’re very welcome @Zim, please don’t hesitate to ask whatever you need as I’m sure someone here will have an idea of what you’re experiencing.
I remember well the shock and disbelief after diagnosis that I was walking around with blood cancer, it felt unreal and a bit like body horror for me initially.
Some folks around the forum call these Myeloproliferative neoplasms ('MPN') ‘invisible cancers’ as we can often function pretty normally with few external signs of our diagnoses. Others might feel a sense of survivor’s guilt at ‘getting off lightly’ but we still need to figure out how to coexist with Polycythaemia vera ('PV') which can take some time.
My advice is to feel it all, let the information sink in, and check in with yourself every now and again. Sharing with trusted loved ones helps so that it’s not just swilling around in your own head. Hopefully with time it’ll come to feel, dare I say it, a little routine!
Oh final tip is that our nurses are great sources of useful information so make sure to ask them when you go in for venesections, mine have been essential in keeping me feeling optimistic!
It has been a bit of a rollercoaster, certainly finding out there was a feeling from staff that I’d been very lucky walking around with such thick blood and that drive home, to then waiting for the diagnosis but knowing it was likely a cancer and the worries that come with that.
Since diagnosis I have had that feeling of guilt, there’s been different cancers across my family all with the different possible outcomes and so what have I got to worry about? I’ve had some difficult moments but generally ok and the nurses at IVAS have been great, there’s always a laugh and even a bit of banter, just what I’ve needed at times, especially when I was going weekly
You’re not alone in feeling lucky to have had it develop unknowingly @Zim, and in some ways this might feel like the best-case scenario. Sadly, many around the forum experience a clotting event that takes them to hospital which leads to testing and diagnosis of Myeloproliferative neoplasms ('MPN'). Others, myself included, experience a clotting event which is not linked to Myeloproliferative neoplasms ('MPN') until years later.
Surviving a clotting event means our specialists consider us to be at higher risk of further clotting and, from my understanding, we are usually recommended to start taking medicine like hydroxyurea or similar sooner—perhaps you won’t need to as your blood has thinned so well without? Something to speak to your specialist about I’d say.
I’m sorry to read that your family have experienced cancers. I would say not to minimise your own diagnosis or lived experiences, we all have individual cases of the big C and unique ways of responding. We may not necessarily show that we have blood cancer, but it is still a life-changing event like with other “classic” types of cancer. Medicine and treatments continue to evolve, even with a chronic type like Polycythaemia vera ('PV'). I’m holding out hope that there will be remission or even a cure for Polycythaemia vera ('PV') within my lifetime.
So glad that your nurses have been great too, they can really be incredible at juggling our care whilst jabbing their needles in! One of my phlebotomists always apologises even though they’re so skilful that I barely feel it, so I make sure to thank them for being delicate. Another makes me laugh so much that I feel bad for the other patients in the ward! I like to imagine it can be rewarding to see how their patients come to manage all this over time.
I’m also a very recent member of the Polycythaemia vera ('PV') club, being diagnosed at the start of the year and having my first venesection today (went ok, there were biscuits so I was happy).
I had terrible migraines that were very worrying too, so similar to you, and almost instantly managed once I was on aspirin which is both a relief and slightly terrifying. Like you say, you’re walking around with this thick blood and it could have gone very wrong but luckily (sort of) it didn’t, so it is a weird feeling.
As Duncan says, fatigue is common with these disorders but should be discussed with your consultant to make sure nothing is being missed but also if it can be helped in some way. I need a nap from time to time, but actually feel a lot better just not having migraines so having a bit of a bounce at the moment.
It’s good to hear your need for venesections have quickly reduced. I have another one next week and I think weekly until my haematocrit is in the acceptable range so I hope I respond as quickly as you!
Aw hey there @Barry1, this good news of yours really heartens me! I’m so glad the migraines are manageable now, and your venesection went okay today. I’ll keep my fingers crossed they continue to. Also, more biscuits!
You know, you mentioning that bounce reminds me of how I can feel after a bloodletting—it’s as if being 1 pint lighter puts a spring in my step. I wonder if it might be relief too, like a weight is lifted knowing my blood has been made thinner and thus less risky?
Anyway, it’s time for Friday Forum Jukebox Club again already, care to add more cool music?! Perhaps you might like to see what music fellow forum members share and join in too, @Zim?
The headaches/ migraines disappearing has definitely been a positive, plus after a few of the first venesections the fatigue I’d been suffering from lifted too, I felt back to myself.
Glad your migraines have gone.
For me, it took about 3 months to get down to target and now just seems like the occasional 3 or 4 weekly check, to see when my hct goes above target, hopefully build up a pattern then.
