Who else has Polycythemia as a condition

I have been diagnosed with Polycythemia as a condition rather than a disease so not PV. After over a year of hospital tests my Consultant still cannot locate the cause. Venesection has eased the matter but concerned at not knowing of the cause and thereby a solution.

Does anyone else have such a condition and if so has traced a cause and any treatment.

Looking for a referral. Any ideas for London who would be the best Consultant to see.

22 Replies

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  • Hi.

    Hmmm, sounds to me as if your consultant isn t too au fait with PV.

    This is a rare blood cancer. Treatable but not curable.

    There is no known cause.

    I'm a 58 year old female who was diagnosed 3 years ago.

    Suggest you look at mpdvoice.org.uk - superb support group and website.

    Claire Harrison is a reknowned haematologist specialising in myeloproliferative disorders, of which pv is one.

    She s based at st Thomas's in London.

    You will to some extent have to be your own "project manager" and learn how to optimise your health.

    I recommend the following: it helps me anyway!

    If you have aquagenic pruritis - burning itch associated with bodily contact with water - avoid bathing and showering, tight synthetic clothing, sugary foods and alcohol.

    To combat fatigue

    Take plenty of exercise - walking briskly for at least an hour a day is hugely beneficial.

    Drink plenty of water to stay well hydrated - avoid alcohol, eat really healthily avoid foods cont chemicals preservatives and additives if you can.

    Hope that helps.

    You 'll be fine, really!

  • Hi.

    Hmmm, sounds to me as if your consultant isn t too au fait with PV.

    This is a rare blood cancer. Treatable but not curable.

    There is no known cause.

    I'm a 58 year old female who was diagnosed 3 years ago.

    Suggest you look at mpdvoice.org.uk - superb support group and website.

    Claire Harrison is a reknowned haematologist specialising in myeloproliferative disorders, of which pv is one.

    She s based at st Thomas's in London.

    You will to some extent have to be your own "project manager" and learn how to optimise your health.

    I recommend the following: it helps me anyway!

    If you have aquagenic pruritis - burning itch associated with bodily contact with water - avoid bathing and showering, tight synthetic clothing, sugary foods and alcohol.

    To combat fatigue

    Take plenty of exercise - walking briskly for at least an hour a day is hugely beneficial.

    Drink plenty of water to stay well hydrated - avoid alcohol, eat really healthily avoid foods cont chemicals preservatives and additives if you can.

    Hope that helps.

    You 'll be fine, really!

  • Hi.

    Hmmm, sounds to me as if your consultant isn t too au fait with PV.

    This is a rare blood cancer. Treatable but not curable.

    There is no known cause.

    I'm a 58 year old female who was diagnosed 3 years ago.

    Suggest you look at mpdvoice.org.uk - superb support group and website.

    Claire Harrison is a reknowned haematologist specialising in myeloproliferative disorders, of which pv is one.

    She s based at st Thomas's in London.

    You will to some extent have to be your own "project manager" and learn how to optimise your health.

    I recommend the following: it helps me anyway!

    If you have aquagenic pruritis - burning itch associated with bodily contact with water - avoid bathing and showering, tight synthetic clothing, sugary foods and alcohol.

    To combat fatigue

    Take plenty of exercise - walking briskly for at least an hour a day is hugely beneficial.

    Drink plenty of water to stay well hydrated - avoid alcohol, eat really healthily avoid foods cont chemicals preservatives and additives if you can.

    Hope that helps.

    You 'll be fine, really!

  • no. all tests prove no sight of disease, cancer or pv. it seems mechanical. but no one can find the cause. reason for my frustration. but no ailments as you indicated. Clai re is on my list to contact for a referral.

    thanks for reply and hope things are not too stressful for you.

  • I have been diagnosed now with what I'm told is Polycythaemia Rubre Vera for coming up two years and advised that this is just one version name of a disorder that goes by a number of slightly different titles. At no point have I ever been told that it was a disease - only a rare blood condition/disorder (though one wouldn't think it so rare by the amount of fellow PV'ers who communicate through this medium). Like others here, I've seen a veritable plethora of consultants, doctors, specialist nurses, the works and not one of them has said "you've got this due to......". This is probably because they've all said that nobody actually knows how we get it. Must've been something that triggered that JAK2 gene to go splat, but..... Lifestyle ? Too much caffeine ? Looking out the window ? It remains a mystery.

    My ailments with this ? Thankfully, nothing serious as yet but do feel fatigued (but that may be due to my work) and could be because it's still relatively early days. Long may it continue that way too.....

    As Louise has said, Claire Harrison is probably the haematologist to see if you can but guess it depends if you have a preferred area in London to where you can get to.

    I wish you the very best in how things progress and would dearly love to hear how things work out for you in the future so please do try to keep us informed as I'm sure it's something that we may all benefit from in some way.

    Kindest regards to you and very best wishes.

    p.s. venesections made my counts worse so on hydroxycarbamide specifically for my P/PV/PRV/whatever the heck it should be called ! ;-)

  • Hello,

    By saying that you have a condition called Polycythemia, what you are referring to is most likely "Secondary Polycythemia' and NOT Polycythemia Vera -- there is a big difference in

    the two. "Secondary Polycythemia' can have causals that involve oxygen related issues

    such as smoking, living at a high altitude, etc.and it is curable once you remove the

    causal (cease smoking, move to lower altitude, etc.) and it usually takes about two years

    to 'cure' after you learn the true cause. Take a look at the 'Secondary Polycythemia' info

    in this link: en.wikipedia.org/wiki/Polyc... (copy/paste into search bar) --

  • Hello, I have been diagnosed with PV but cause is unknown. All I was told that was, for some unknown reason, my bone marrow is producing too many red blood cells. Treatment by venesection only so far. The only real gripe I have is that haematologists have told my occupational health that fatigue is not a symptom of what I have got at the most recent hematocrit level!

  • Its while since you posted. I would like to tell you I have only gust been diagnosed and the main factor that I complained of was infect fatigue

    all THE best

  • Hi, I just read your question.

    I have the same condition as you, I had radio-active isotope tests at the Hammersmith - done three times over a two year period because each time the results were inconclusive! I had spleen tests and scans which were also negative. I have also had the Jak 2 test done which came back negative!

    I have always had a relatively high haemoglobin but without any problems. I knew what it was because I was a nurse and had it checked at intervals since I was in my 20s. About ten years ago it was found to be extra high and I was referred to Anne Yardumian at the North Middlesex Hospital. She is an excellent haematologist and I would recommend her if you live in this area although as previously suggested, Claire Harrison is the true expert in this field.

    So . . . . I do not have true Polycythaemia but do have raised haemoglobin and packed cell counts (Haematocrit). I have none of the symptoms associated with True PV such as itching skin, red face, tiredness etc. I see Ann Y regularly and in fact had my regular appointment to see her this morning.

    I have venesections each time my blood counts go above a certain level and this is all that I need. She has said that we will probably never know the cause of my condition but we are treating it in the correct way to prevent any complications. I am also on a 75mg Aspirin daily in addition to the venesections.

    It has not been possible to say just why I have this tendency to a raised Hb etc but Dr Y is certain that by regular checking and venesections as necessary I will not suffer any ill efffects. We think that my mother, who was half Maltese probably also had the same condition as she had several DVTs and a major stroke when she was only 70 years old but her condition was undiagnosed and therefore not being treated as mine is.

    My daughter also had a fairly high haemoglobin for a female and is monitored but not requiring any treatment at present.

    I attended the MPD support group meeting at St Thomas' Hospital last week and would highly recommend that you go to them if you can. The next one is due in May 2013. I would be happy to talk to you more if you think it would help. I just feel grateful that I am being monitored and getting the correct treatment to ensure that I do not have any ill effects from this condition.

    There is no chance of this particular form of raised Hb turning to a blood cancer so please do not worry on that score. Best wishes, Rosie.

  • Hi. Seems we have a similar condition. High red blood count and advised I have secondary Polycythemia. Not certain if my dad may have had but they were probably not that up on things say 20 years ago. My Consultant will monitor and I have monthly venesections now. They base it on see what happens as over time a cause may manifest itself. I also take the asprins and also statins but find they have adverse effects after a while. See what Professor Claire comes up with as going to get a referral to her

  • Hello,

    Beverly makes a good point about the difference between secondary primary polycythemia so you need to try and get that cleared up as the right treatment is important.

    My diagnosis was confirmed due to my enlarged spleen- this was in addition to a number of other 'non-specific' symptoms. A JAK2 test could also help confirm whether you have PV or not.

    My understanding about this 'condition', ''disorder', 'blood neoplasm' etc is that it is ideopathic, i.e. has no known or recognized cause that has as yet been identified. Its description as a blood disorder has changed and it is now classed by the World Health Organization as a form of cancer, hence blood neoplasm. As I say, you should try and get a clear and definitive diagnosis as this will enable you to get the correct treatment.

    I wish you well.

  • advised i have secondary and tests showed no jak2. had loads of tests which indicate secondary but not the cause. so reason for referral

  • I have had PRV too, for a number of years. Had 13 phlebotomies and a thrombosis that could have killed me, and since then have been on coumadin (warfarin) to keep me stabilized. In August I had a heart attack, although I don't know if it is connected to the PRV, which is a rare blood cancer as stated above. The thing to do is keep on top of symptoms with your doc, who has to be your partner. I do as much research as possible to understand what is going on in my body and to be able to ask informed questions. Best of luck with it. Feel free to contact me.

  • Well I am a bit confused!!! I was diagnosed with Polycythemia vera rubra in January 2010 when my blood count was 24.1. I had venesections to start with to bring down my count but not had one since 2010. At no time have I been told its blood cancer which is a bit shocking. I am currently on aspirin and hydroxyurea which stablizises me. I see a consultant every 3 months.

    I was told a chromozone had mutated when asked why. This was made all the more confusing as in 2007 I had to have a blood transfusion as my blood count was so low due to fibroids. What I don't understand is how in a couple of years my count can change and what if anything caused this mutation. Can this mutation change back again...lets hope so.

  • Hi, just a couple of quick points that might be helpful. Firstly before the WHO changed PVR from a condition to being defined as a form of cancer I was paying for all my prescriptions. When I asked my hematologist about this he signed a form so that I was classed as suffering from cancer and did not have to pay. The fact that it is now classed as a cancer doesn't alter the prognosis so there's no need for additional worries on that score. Secondly, all cancers are due to a gene/chromosome mutation; the cause of the mutation is unknown hence idiopathic. Hope that helps.

  • Hello,

    I am a 26 year old female with elevated hemoglobin, red blood cell, and hematocrit for no apparent reason and no family history. My white blood cell and platelet count is normal. It was found accidentally when I received a CBC for an unrelated reason. I went to a hematologist and Polycythemia Vera was ruled out due to a negative Jak2 gene. I also underwent a sleep study (polysomnography) to help determine if there was secondary polycthemia. My sleep study was normal and showed no sleep apnea. I do not have any other common causes of secondary polycythemia such as COPD and live at sea level. I did some detective work and discovered that I have had a steadily increasing and abnormally elevated hemoglobin level for at least the past 8 years. Other symptoms that I experience include extreme fatigue; development of a bright red, intensely itchy, and warm -to-touch rash if out in the sun for 10 minutes or so or more; hypertension; shortness of breath; ringing in the ears. I do not experience the hallmark pruritis to water and my spleen was normal on examination. I was seen by the hematologist twice before being discharged from his care - no diagnosis or explanation was given.

    Any thoughts on the matter are welcome. At this point I plan to live a normal life, but would like to revisit a different hematologist in the future as I am unsatisfied with this conclusion.

    Best,

    Gatorgrad

  • Hi

    It is possible to have PV but be JAK2 negative, although about 95% of PV patients are JAK2 Positive.

    Likewise pruritis and spleen enlargement arent found in all cases, we all are a mixed bag, im jak2 positive, dont get pruritis but have a massivly enlarged spleen. A lot of people with PV have normal white cell and platelet counts. I do.

    I agree you should seek a second opinion to determine if PV or if some other reason you have the problem. It definately needs monitoring, did your heamatologist not say anything about lowering the counts or regular monitoring?

    Paul

  • Hi Paul,

    Thanks for the reply. While the hematologist I saw was highly educated and employed with a very reputable research university, I felt his assessment was very rushed and he admitted that he was a "conservative" physician when it comes to treatments. On my second visit, he was accompanied by another physician and they both agreed that I should be discharged from their care. My hematocrit on that day was 49.9 and he said if it "had been 50 or greater" he would be uncomfortable discharging me, thought he admitted it had been above 50 on our last appointment. Everything happened so quickly I hardly had time to ask questions. His only recommendation was to donate blood 2-3 times per year and have my primary care doctor check my values maybe once a year for monitoring.

    -gatorgrad

  • Hi

    You do need to go see someone else, there is always a margin for error on HGB/HCT Levels which can be affected by how hydrated we are, if you are dehydrated it can give a higher reading, very hydrated a lower reading.

    If your HCT is as high as that when you go and donate blood there is a good chance the people taking the blood, when they examine your results, will raise an alarm and contact you anyway. I know a lady at the Manchester forum last year only discoved she had ET from being a blood donor where they found her platelets where to high.

    The normal range for a woman is 36-46, you dont stated your HGB but im guessing its around the 17 mark?

    I know some of the ladies on here have said when there HCT gets close to 46 they start to feel very fatigued.

    If lowering HCT was as simple as just giving blood now and then, im sure thats what everyone would be told to do. I have not had to have a venesection but i beleive those that have often have to have a few before their bloods get to a normal level.

    You dont state where you are, if its UK then im sure someone on here will be able to recommend a hospital near you.

    Best wishes

    Paul

  • Sorry just to add, my haemotologist says for men the aim is to keep HCT below 45% so guess this would be about 40-42% for women

  • Hi my name is Julia, it's really interesting to here you all talk about polycythaemia in great detail and your experiences, I'm going to see a haematologist on Thursday as my haemoglobin, red blood cells and hemocrit levels have been constantly high (just above high) for over 18 months now and every blood tests the reading are getting higher, I don't smoke, I'm a healthy female of 46, I exercise regularly, I am over weight but I am also going through the "change", I get itchy skin, horrendoes palpitations almost daily, I get headaches, tiredness, my hands and feet are extremely cold in winter and feel puffy and stiff in hot temperatures. So I'm hoping there's a solution to all my symptoms, I want to get on with my life and these symptoms are getting me down, if I do have polycythaemia it is probably in early stages. Does anyone have any advice. Xx

  • I have the same diagnosis! I'm so glad to hear of someone else going through this. (Not that I wish it upon you) I was diagnosed with secondary polycythemia 16 years ago. They have never pin pointed the cause. The finally decided I have stress polycythemia but I don't understand much about it because there's not much information about it. Have you figured anything out since this post?

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