Just found out that I have a blood disease,

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I just found out that I have a blood disease where my body is making way to many red blood cells. My family doctor has sent me to see a blood doctor. I well see her for the first time next Tuesday, first Tuesday in Feb. I have been doing a lot of reading on line. Because my wife don't want to talk about it until we know for sure just what we are talking about. I know for sure I have something wrong, all my blood tests has shown that the red blood cells are very high and some other tests show that my blood is high in some other tests. My oxygen in my body is low. Can someone tell me how they felted before you found out anything

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17 Replies

  • Posted

    hi, I found out I had polycythaemia Vera in October 2017.this was after having a stroke in September 2017 caused by reduced blood flow in the brain. the initial way of getting the blood countdown is to do venesection. After venesection they put you on hydroxycarbamide. for me it works quite well there are side effects for that varies from individual to individual. i hope this helps.


  • Posted

    Hi, Polycythemia Vera is one possible cause of elevated red blood counts, you could also possibly have just polycythemia (also called secondary polycythemia) where there is another cause of the high red cells, such as smoking, sleep apnea, high altitudes, etc. Your doctor will run some tests to verify which is the cause of the condition. If it is Polycythemia Vera it is a chronic condition but is treatable, so don't panic. Best wishes to you.

  • Posted

    Hi JT, I am in the exact same predicament, literally. By that, I mean I was recently referred to internal medicine where a gene mutation test came back positive for the JAK 2 V617F mutation and low/normal EPO test so I am being referred on to hematologist. My hubby seems reluctant to discuss as well until we get the official diagnosis from the hemotolgist although internal medicine doc has already indicated it's all but confirmed. My appointment is also for next Tuesday, Feb 5th. I'm a 49 yo female. My most recent blood-work was WBC 13.3 range 4-11 (Neutrophils 9.1, range 2.0-7.5), RBC 5.15 range 4-5.10, Hemoglobin 167 range 120-160, Hematocrit .48 range .35-.45.Not sure where you're located, I'm in Ontario, Canada.I, like you, have been doing tons of research. There's also a really good FB group you can join (polycythemiaverasupport). My feelings are mostly anxiety as I am not entirely sure what to expect at the appointment, if she'll order a bone marrow biopsy or any other tests or give me an official diagnosis based on existing results including mutation positive. I also feel comfort however, knowing knowledge is power and there is a great deal of info out there. Check out a site called PV reporter as well. Knowing there are a lot worse things one could be diagnosed with and that PV can be managed for many years is also a comfort. Best of luck to you next week. Please let us know how you make out.

  • Posted

    Hi there I am a 60year old male living near Manchester in the UK , iI was diagnosed with PRV in 2014 , for 4 years iI just had venesection, but since turning 60 I have been on Hydroxycarbamide, with no side effects at all, there is no need to worry about this disease as it is very maintainable, hope everything goes well for you x pele

  • Posted

    Hi i was diagnosed May 2015 after random blood test My GP noticed my Hb was high. I had no definite symptoms. As long as you are under the care of a haematoligist, don't worry.

  • Posted

    Hello there,

    Lots of good advice already.

    You say that your blood oxygen reading was low. Do you smoke? If you do, stopping is one of the best things you could do to improve your health. with immediate results.

  • Posted

    hi i was diagnosed with PV in 2012 and the hemo did the usual by removing blood from there to taking hydro tablets , six months later ,my wife was diagnosed with the same problem , they tell you its a gene , dont belive it

    • Posted

      Hello andy, What an interesting thing to hear.

      While there definitely is at least one gene that is linked to PV, the JAK2 one, I myself have felt from the start that there is more to this thing than meets the eye. I am particularly not convinced that it is a rare disease.

      For a start, what about all the people who may well have the disease but are never diagnosed because the die of something that seems to be more run of the mill, such as a heart attack or a stroke. Or maybe they just get run down by a bus.

      And of course, throughout our lives our genes are throwing out mutations, most of which never have any effect at all on our daily lives.

      And certain chemicals cause genetic mutations, they certainly cause cancers.

      I grew up in a heavily polluted area of England. I am a keen gardener and I used to be an enthusiastic user of chemical control such as herbicides and pesticides. No longer. I personally feel that something in my life has brought this about, though that is not to say that I don't also have a genetic i.e., family predisposition to acquire PV. Every member of my family that I know the details of has either had or died of some type of cancer.

      If you can come up with the common link between us all you will be in for a Nobel Prize. šŸ˜‰

    • Posted

      I'm interested that you don't think its rare. I'm coming to that conclusion too!

    • Posted

      Hi Angela,

      I'm sorry for the delay in replying. My wife looked into this after she was diagnosed with PV, she found that the Americans had it sussed out that there was a link between PV and PETROCHEMICAL plants. OUR house is in a direct line to a Petrochemical plant called MOSSMORRAN in Fife, Scotland. After this plant opened, there was a spike in childhood LEUKEMIA. All within a couple of years, there is also a street that looks directly opposite it and there is hardly a home without someone living with some form of cancer.

    • Posted

      I have a daughter, so if it is genetic, why has she not been tested. I also want to say that in no way was my wife and I related.

    • Posted

      Don't worry about delays, I'm not exactly glued to my ipad, even on a good day. Don't have a mobile phone either. šŸ˜ƒ

      My mum was from Fife. My gran lived in Kirkcaldy. Many happy summer holidays spent sniffing the Nairn lino works' output while wiggling my toes in the Firth of Forth's somewhat (very) polluted waters.

      I was born and grew up near Sheffield -only a mile or so away from a large coking plant. You can see a good photo of how it looked in the 1950's if you go to the website picturesheffield dot com and put s10726 in the search box. I doubt that there were any scrubbers attached to its chimneys. It has a sort of similar look to Mossmorran. No doubt the biproducts bore some resemblance too. Closed down now and the site is due to become a new, unnecessary service station on the M1. Progress?

      I tried to suggest something about a possible link to the coking plant to one of my consultants once. But he just dismissed it by saying that lots of his patients live in rural Derbyshire and never met a coking plant in their lives. No, but I'm pretty sure that they came across organophosphates and weird sheep dip preparations and heaven knows what else. But hey, who am I to have an idea or a thought? I stopped bothering to look as if I had a brain after that. To give the hospital staff their due, I suppose they are too overworked to have any spare time for fanciful thoughts about things.

      Don't know how I would feel about a child of mine being tested - not sure that I would have wanted to know any sooner than I did in my own case. Ignorance was bliss. šŸ˜ƒ

    • Posted

      Hi andy36717, did your PV ever cause muscle aches and muscle weakness?

      I had blood tests to find out why I am having muscle pain and they found that my Haemoglobin is high. I don't smoke, so they are repeating the tests to see what is going on.

  • Posted

    @JT67058 Hello, just wondering how you made out today? Take care.

  • Posted

    Hi ,

    Here are some latest good news about the new generation first-line drug for PV patients:

    The European Commission (EC) has approved BesremiĀ®(ropeginterferon alfa-2b, P1101) as monotherapy in adults for the treatment of polycythaemia vera (02/19/2019). The European market authorization makes Besremi the first and only approved treatment for polycythemia vera (PV) presented at EHA 2017.

    The following papers are for reference only:

    1. Abstract EHA-3520: An update from the PEGINVERA study (NCT: 2010-018768-18) on long-term maintenance treatment of up to 6 years (median of 4 years) with Ropeginterferon alfa-2b was provided. Patients were successfully switched from the once every 2 weeks to the more convenient once every 4 weeksā€™ long-term maintenance dosing schedule after a median of approximately 2 years.

    2 .Abstract EHA-3556: To alleviate the known burden of frequent health care office visits for product administration, home self-administration and patient individual dosing of Ropeginterferon alfa-2b were performed in the PEN-PV study (NCT: 2014-001356-31).

    1. Abstract EHA-1564: To assess the disease modifying capability of Ropeginterferon alfa-2b compared to hydroxyurea (HU), the effect of treatment on hematopoietic bone marrow progenitor cells was investigated in 10 patients of the French PROUD-PV study population (NCT01949805).

    In short, BesremiĀ® is a novel, long-acting, mono-pegylated proline interferon with improved pharmacokinetic properties offering improved tolerability and convenience. Patients were successfully switched from the once every 2 weeks to the more convenient once every 4 weeksā€™ long-term maintenance dosing schedule after a median of approximately 2 years. The majority of patients showed a sustained reduction of the mutant JAK2V617F allelic burden to below 10%, demonstrating the disease modifying capability of Ropeginterferon alfa-2b treatment.

    Conclusions:These data confirm a) the high and durable hematologic response and symptom improvement achieved with Ropeg, b) the excellent safety and tolerability profile of Ropeg, and c) the disease modification capability of Ropeg suggested by its ability to significantly reduce the mutant JAK2 allelic burden. BesremiĀ® will provide a valuable and safe new long-term treatment option for PV patients.

    I think the new generation interferon( BesremiĀ®) may a good choice for a permanent cure !!

    Best wishes

    • Posted

      Thank you for that interesting information, lijuan.

      I mentioned the name of this drug to my haematology nurse today while I was at the hospital for my quarterly chat session. She hadn't heard of Besremi but was very keen to know more.

      I doubt that it will become available here on the NHS system in UK if we crash out of the EU without a deal, or even if we leave with a deal, and if it should somehow become available on the NHS they will no doubt be obliged to pay top whack for it and NICE will probably then say that it is unaffordable.

      I am still just working on the basis of aspirin and venesections myself, but it does look like a step in the right direction.

    • Posted

      Hi Angela,

      Sorry for getting back to you so late.

      I can tell you why the new generation interferon may a good choice

      for a permanent cure!!

      Here is the latest good news about the new generation interferon (Besremi) for PV patient.

      The two latest clinical studies on interferon-alfa for patients with Polycythemia Vera (PV) presented at ASH 2019.

      1. 553 Thromboembolic Risk Reduction and High Rate of Complete Molecular Response with Long-Term Use of Ropeginterferon Alpha-2b in Polycythemia Vera: Results from a Randomized Controlled Study(Besremi)

      2. Interferon-Alfa Treatment Offers Best Outcomes in Polycythemia Vera.

      You can visit the ASH and EHA website to get the latest clinical Information about PV information.

      I think **Besremi **may a good choice for PV therapy in the futureā€¦..

      best wishes and be well


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