PV progression

Hi so I'm newly diagnosed with PV, I'm 40 and in good health otherwise ! My blood counts are borderline (it's only the jak2 stuff which confirmed it) and my only symptom has been itchy skin and my big toe hurting.

What I can't get a clear idea on is what does progression look like - would love to hear from people with PV of similar age and how long they have had it. Thanks !

17 Replies

  • Hi, I am also 40 and was recently diagnosed with PV. I am Jak 2 positive too. I had some abdominal pain that they couldn't get to the bottom of so blood tests were done and eventually this was discovered. My only other symptoms were the itching and frequent silent migraines. Am now taking 75mg of Clopidogrel daily and the migraines seem to have stopped.

    I had my first venesection in Nov and am going for another on 30th Dec. The consultant is hoping that will keep things in check for now. Will find out if it's doing the trick when I see him again in early Feb. If not he has said the next step would be to try a low dose oral chemo but I am hoping to avoid that for as long as possible.

    I have never had any other health issues so it is taking a bit of coming to terms with but I am feeling pretty positive at the moment. I think of it like having diabetes or similar - it is a lifelong condition and it can be dangerous but with proper management and treatment it needn't ruin your life.

    I am making a conscious effort to drink lots of water and eat as well as possible and I find that helps my energy levels and makes me feel like I am doing something positive to help myself :) Am a Mum of 4 and working full time so need all the energy I can get :)

    Not sure about progression as I am also newly diagnosed but would be interested to hear about other people's experiences.

  • Don't know if this helps because I am 64 and was only diagnosed around 3 years ago but I can tell you how my PV has progressed. At first I had symptoms of itchy skin after showers but little else to indicate anything was wrong. My treatment started out with weekly venosections until after a couple of months I dropped down to monthly then after around 6 months to every 3 months with regular monthly blood tests to check out how I was doing. About a year ago I started getting high white cell and platelet counts so I was put onto hydrocarbamide 500mg once a day so the venosections were then not necessary. Then about six months ago I went up to 1000mg a day but this gave me diarrahea so I have now dropped down to 500mg again and having venosections a couple of times a month. As far as symptoms go, the itchiness has never gone away but I find that taking a bath when I finish work rather than showers early in the morning makes it less difficult. I find I am tired by around 4pm and am losing my ability to concentrate for long periods. My mind isn't as sharp as it used to be but perhaps that is old age creeping in! I have also experienced strange episodes when waves of energy sweep through my head, rather like a hot flush but nothing to do with temperature. I am left feeling fuzzy headed and unclear. This doesn't happen that often but a couple of weeks ago I had around 6 of these episodes throughout the day and I couldn't do much the rest of that day either. This may be unrelated to my PV so my doctor wishes to explore it further next year. I was worried it might be mini-strokes but she says not because I didn't suffer from any partial paralysis in my body like you do with strokes. If anyone else with PV suffers from similar experiences I'd love to hear about it. Anyway, hope this helps give some idea about dealing with this long term. PV is manageable but it does vary a lot between individuals and we have to learn to cope with this itchiness. Also along with the itchiness I do feel more agitated and it is more difficult for me to relax and do meditation - which I used to do a lot of. But at least I don't feel that this is going to kill me - just give me a few things I have to cope with in my life - but life is still good.

  • Hi Tony

    I saw your post while going through old emails.

    My experience is very similar to yours, diagnosed at 48, now 59, 60 in July. The fuzzy head bit for me starts with a whooshing sensation in the chest that quickly passes and I get a bit wobbly as the day progresses if I don't eat properly but in general steady away.

    Like most of us I have good and bad days which were worse while in the grieving process on the loss of my sister nearly 2 years ago but as time has passed, so has the low moods and life is pretty positive again now, each to their own eh?

    Stay safe and well all x


  • I am 40 too! I was diagnosed 3 years ago with ET but recently it has changed to PV, which isn't that common!

    I am still just taking aspirin but have just started monthly venesections. My platelets are in the 800's.

    Due to our age medication is best avoided for as long as possible as the long term use of these does carry risks.

    As for the progression, it's not possible to say. The problem is how damaged the bone marrow is, that will define what happens in the future.

  • OK here's my experience of progression, but of course everyone is different:

    - PV picked up through routine blood test for something else when I was c 48, probably had it for several years, otherwise healthy

    - initially red cells too high, no meds apart from aspirin, occasional venesection

    - then platelets started to rise, started on hydroxy and allopurinol (for gout from high red cells), no problems with hydroxy

    - some problems with gall stones due ? to metabolising high levels of red cells: more careful with diet and OK all last year

    - higher counts in red white and platelets so higher hydroxy and some venesections, some long bone pain, night sweats

    - counts started to drop so no venesections and lower hydroxy dose

    - started to have problems with platelets too low, minimal dose of hydroxy

    - Haem thinks I am probably moving towards leukaemia or myelofibrosis

    this has taken about 10 years

    you did ask!

    Most people with PV ( I think statistically c 70%) just stay in the phase bullets 1-3/5 above.

    My advice: take the hydroxy if your Haem recommends it as statistically it helps reduce the incidence of progression to myelofibrosis as well as reducing risk of stroke from high blood counts.

    good luck!


  • Thanks so really does look like everyone is different. I've probably had it for some time (well the itchy skin) so hopefully it's just stays like this for a long time. Hate giving blood but hey it could be worse I guess ! Want to stay away from the drugs if I can but hope it does not develop much for a long time 😀.

  • Interesting to read everyone's replies.

    I forgot to say I have high red blood count as well as platelets. My platelets have been above normal for about 10 years as well, so I feel I have had an MPN for longer than actually been diagnosed for. I had my gall bladder removed about 6 years ago and had loads of gall stones too! My haem would like me to have another BMB in the new year to see what is going on there. Have also had red cell mass count.

  • I was admitted to hospital in December last year after severe abdominal pain. To cut a long story short they found two blood clots, one in the portal vein, one in the Mesenteric vein leading in & out of the small intestine. Unfortunately two feet of my intestine had to be removed due to the tissue having died. I had 3 ops in 4 days and was in an induced coma for two & half weeks - spending a total of six weeks in hospital. In Jan they diagnosed PV but surprisingly I've made a very good recovery.

    Onwards and upwards :)

  • Hi Chris

    As people have said we are all different. I think the fact that you have been diagnosed whilst in good health helps.

    A lot of the issues people have is it going undiagnosed and strokes etc can occur because of the thickening of the blood, as you will now be monitored regularly this will identify if your blood is getting to thick and appropriate action taken where required.

    Im 44 now - was diagnosed 2 and a half years ago....i had chronic anaemia of all things but thats because i have a very enlarged spleen which had caused varices in my stomach which were bleeding.

    I, like you, think i have had for many years prior so feel lucky not to have had more serious issues.

    With regards to progression, as its already been said its different for all of us, some will carry along just fine, yes with some annoying symptoms like itching, for ever and a day with just check ups and whatever treatment is needed to keep us toddling along.

    Others will have more complications, i put myself in that bracket with my spleen and varices etc, and a very small minority may go on to develop MF.

    I really worried about that to start, but then i got to thinking having looked into it, that the advancements in drugs over the last few years is fantastic, im actually on ruxolitinib right now and feel great. But i also think it wont stop there, give it 5 years ruxoltinib might well be considered yesterdays drug, give it another 5 we might even have a cure.

    I would give 3 pieces of advice:

    1. Dont be afraid to ask questions, either here, or more importantly your consultant.

    2. Dont be afraid to shout up if you feel unwell, even if its between appointments.

    3. Always take the word of your consulant over that of your GP, it may seem harsh on GP's but these are rare conditions and you only have to look on here to see that people have got conflicting advice when using their GP's. They have a role to play but the most important person is your consultant.

    Good luck with everything


  • I second all the above, and suggest that a good way to keep itchy skin down is to shower or bath with a cooler temperature than you are used to. And PAT, don't rub yourself dry. That keeps the irritation down a lot - well it does for me. I now find I can turn the temperature back up to something realistic if I avoid towelling.

    Painful toes? Yes, but exercise and rest with elevation helps.

    And especially, ask ask ask. Your consultant may be more inclined to help and advise that your overworked GP, even if he or she can only really deal with your blood issues. He or she will be more well versed in the many ways our condition can take us.

    Good luck!

  • For itching the magical meds are over the counter "Zrtec" and "Zantac" take one pill each daily and 90% of your itching will go away, at least mine did, I have heard this works and now I am a believer..

  • Hi Chris, i'm a 42 yr old mum of 2. I was diagnosed PV in September after ministrokes. I'm currently treated with aspirin and venesections every 7-8 weeks or so. I get a little itching but am starting to see links with my diet with this symptom. Also i can get fatigued in the evenings. I'm still learning but am getting used to having an entirely normal life around this condition. Im finding i can do a lot to help myself, drink lots of water,lots of fresh fruit and veg. I notice the difference when ive not eaten well! Can you tell us more about you Chris?

  • Well I have my first venesection treatment tomorrow so I will know more - at the moment just aspirin for me..hopefully it all goes well. I've seen some people have had PV for 20years plus with little change ! I'm hoping it does not make me too tied as its Christmas and I have two young kids and I'm sure they won't want me sleeping.

    I've got a good consultant I think but I've been reading up and have found one who looks like she leads the most up to date research etc in the UK and so am going to go and see her. No idea what my platlets are yet, guess when I get more info tommorrow I'll know, all I know is when I asked my consultant she said low risk and out of 10 how serious a 2/3 out of 10.

    It's really helpful to see how other people have got on

    Merry xmas !

  • Hi chris, good luck with your venesection today. Im sure youll find it quick, simple and easy. We are lucky to have such a straightforward treatment really. Let us know how it goes. I usually find a venesection makes me feel great. Which hospital and consultant chris?

  • 1st treatment went fine, hopefully I don't feel any side effects tomorrow ! Looking to guys and Dr Harrison, she seems to have a very strong reputation.

  • My husband had monthly venesections he was always fine no problems. On an odd occasion he did feel extremely tired but not that often.

    He's never been off work which is good he did start to struggle with tiredness but now he's on hydroxocarbide he's been fantastic.

    Good luck

  • HI Chris,

    My husband was diagnosed 2 years gone November with polycthamenia jak 2 positive.

    He had terrible fuzzy headaches just didn't feel right he put it down to stress with work. His blood pressure was sky high.

    So he had a well man's check his blood was so thick the nurse struggled to get a blood sample. This sample came back with his diagnosis.

    At first we were devastated after researching on the Internet about pv.

    But I cam honestly say he's been having a pint of blood removed monthly for nearly two years. It was taking its toll on him so 8 weeks ago he opted to go on hydroxocarbide chemotherapy tablets it's the best decision he's made I won't lie he was so frightened to start these tablets. He's felt great no side effects and his platelets have come down along with his hemocratic level.

    He's 43 now so he was similar age to you when he was diagnosed.

    This site is fantastic we've learned so much from others on here.

    We found out pv is covered by the critical illness cover insurance we've got on our mortgage.

    You've come to the right site here for support and advice.


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