Newly diagnosed with PV

Hi

I have recently been diagnosed with polycythemia vera following a routine blood test . My lovely Haematologist told me about MPD Voice . I am so pleased she did as I have found your site so helpful . Me and my family were shocked and a little overwhelmed to be honest when this all happened as we really didn't know much at all bout these myelo proliferative neoplasm diseases. It all seemed so complicated and a little overwhelming but reading everyone's stories on here has really helped . I had a DVT ando bilateral Pulmonary embolism at the start of the year and the medics were scratching their heads as to why - my Haematologist thinks undiagnosed PV may have been a contributing factor.

I have just started a series of venesections to see if this helps and if not they are querying starting me on interferon ( I have history of melanoma so hydroxyurea is contra-indicated.

Also they are changing my rivaroxaban to warfarin. She also wanted to start me on aspirin but unfortunately I am allergic to it ( makes my eyelids and airways swell ).

I have a couple of questions

Has anyone any experience of interferon ?

Are there alternatives for aspirin to help reduce stickiness of the platelets ?

Also does anyone have any information about the allelle burden and if this is a prognostic indicator regarding future thrombolytic events - they keep saying I am high risk because of my previous DVT and PE

Sorry for all the questions but everything is all so new to me - I just feel if I am to live with this disease I want to understand it and also all the options I have - as they say knowledge is power !

Thank you for taking the time to read this .

15 Replies

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  • Hi Dianne and a big welcome to this forum where you will make a lot of new friends from people you might never meet but who understand fully what you are going through and are happy to help and support. You will also have access to medical information on the MPD Voice website and you can also get answers to medical questions through Maz our editor who monitors this forum so you know you can trust the information you are getting. Maz can even provide you with a buddy if you would like more support. Maz and her team also organise forums up and down the country which are free and great to attend. They also include a families group which is so important as our families share our illness with us.

    I was diagnosed with PV in 2012 and I am fortunate so far that it is controlled by venesection only. How long this will continue is anyone's guess so I can't answer your questions about interferon but I know someone on the forum will.

    Please keep in touch, we all support one another and joining this forum was the best thing I ever did. Like you say, if you have more understanding of your illness, it gives you some control which is important. When we are having a bad day we send each other words of support and "E" hugs. So sending you some welcome E hugs and best wishes Aime.xx😺😺😺

  • Hi Aime

    Thank you so much for your lovely welcome to MPN Voice and especially your "e" hugs. I am so pleased that you are being controlled on venesection - long may it continue for you.

    Big "e" hug back to you

    Dianne

    xxxx

  • Hi Dianne, welcome to the Forum and so pleased your haematologist directed you here. The good thing about being diagnosed is that now your counts will be controlled which will hopefully reduce your risk of future thrombolytic events.

    I was diagnosed with PV in 1988 after an MI and I then had a DVT, but since getting good control (with HU for me) have had no further events. For a while I was on Persantin as an anti platelet sticky agent, but came off it a few years ago when my haematologist didn't think I needed it. It could be that is very old fashioned as I think I was on it from early on but worth asking re an alternative to aspirin?

    Sorry no experience of Interferon but someone here will have.

    Good luck as you get control and learn to live with this condition - and live you can, I'm coming up to 29 years and still work more than full time, and do everything I want to as well!

    best wishes

    Fee

  • Hi Fee

    Thank you so much for your reply and kind words. It is great to hear you are doing so well and long may that continue !

    It is all just a bit overwhelming at the moment and worrying (especially for my family) when the Haematologist keeps saying I am "high risk" My family are really worried that I am iminently going to have another thrombolytic event so hearing your story is really reassuring.

    It's not just patients who have to live and come to term with MPNS is it ?

    Thank you for your kind support.

    "E" hugs to you

    Dianne

    xx

  • Hi,

    I had bilateral PE after the birth of my daughter 18 years ago. I may have had PV at the time but I wasn't diagnosed until I had a portal vein thrombosis in 2009. Since then I've taken warfarin, I did take aspirin for a short time but then my haematologist told me to stop. Like you, I'm at high risk due to previous events but as long as my blood results are in the right range I don't seem to have any problems.

    Keep positive

    Nicky

  • Thank you so much for your kind words and advice Nicky . I will definitely be keeping positive :-)

    Dianne

    Xxx

  • Hi Dianne and welcome to this forum. I was finally diagnosed with ET in March this year, following a minor stroke in October 2015. I appreciate what a huge shock this is when newly diagnosed especially if you see yourself as a fundamentally healthy person, which I do. I was put on Clopidogrel which is a platelet disaggregater (?spelling), this is a more modern drug than aspirin. I have a history of poor drug tolerance but I have been absolutely fine on this one, so I suggest worth enquiring about for you.

  • Hi Tessa

    Firstly , thank you so much for your email and I am so pleased that you are doing well . I will definitely discuss the clopidogrel with my haematologist when I see her nex in a couple of weeks .

    It is so heartening to hear of people who are doing so well and also how kind and supportive everyone is on the fantastic MPN Voice .

    Thanks once again

    Dianne

    xxxx

  • Hello Dianne, welcome to our forum, I can see you have had some lovely replies already and as Aime has said, you will find out lots on our website mpnvoice.org.uk, including videos from haematologists and patients, and one that I am sure will be of interest to you, it's Alisia talking about Interferon and how she injects, mpnvoice.org.uk/about-us/vi... If you would like me to send you any of our information booklets, or even details about having a buddy then please email me at maz.cd@mpnvoice.org.uk. There are alternatives to aspirin, it would be best to discuss this with your haematologist as they can advise you on the best alternative for you as they will take into account all your previous medical history when prescribing any medication.

    We all understand how you re feeling, it can be very overwhelming when you are first diagnosed, not just for you as the patient, but for your family members as well, but you are not alone, we are all here to support you as much as we can, so please feel free to ask anything and we will do our very best to answer your questions, I will get back to about the allele burden question and what it means for you.

    Best wishes, Maz

  • Hi Maz

    Thank you so much for your email . MPN Voice absolutely rocks !

    I have had so many kind and supportive messages which have helped me already. I think the better informed you are and the the better knowledge you have - the better partnership you can have with your haematologist . I will definitely discuss if I should be commenced on clopidogrel due to my aspirin intolerance with my haematologist when I see her next in early December .

    I woulreally appreciate any leaflets that you think would help and will email you my email addresses .

    Once again thank you so much for taking the time to reply to me so quickly and also for looking into the allelle burden and it's possible prognostic link to future thrombolytic events.

    Once again

    Thank you so much . Dianne xxxxxxx

  • Hi Dianne, answer to your query about the allele burden, Prof Harrison has said:

    We don’t use the allele burden to predict risk of thrombosis.

    Strongest predictors are

    Age >60

    Prior event

    WBC >15-20 (about to start being used I think)

    And uncontrolled HCT

    I hope this helps.

    Best wishes, Maz x x

  • Hi Maz

    Thank you so much for checking this out for me and thank you to Professor Harrison aswell.

    Kind regards

    Dianne

    xxx

  • Hi Diane. I have been taking clop I do grey for 13 years cos I cant tolerate aspirin. Good luck. Anita.

  • Sorry that should have been Clopidogrel. Predictive text!!!

  • Thanks Anita

    I will ask my Haematologist about it at my next apt .

    Dianne

    Xxx

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