I'M RELATIVELY NEW HERE!

My first post as I was only diagnosed late December 2016 with PVJAK2. I have been reading all your posts with great interest and have found answers to many of my questions on here, relating to symptoms connected to PV, particularly breathlessness and exhaustion - my mind seems to go blank when I see my specialist! The Hydroxy 500mg daily) aspirin and venesections ( have had three in total since diagnosis) are really helping with most of the symptoms but the breathlessness has only started in the last two months so am unsure if it is a "symptom" or a side effect of the treatment. My doctor sent me for an xray last week after I mentioned the breathlessness to him a couple of times, no results yet. Most days I feel fine but there really is no warning when the exhaustion might hit. Have gone from weekly appointments in the beginning to six weekly so feel I am going in the right direction. I am finding this Group an invaluable support and source of information.

6 Replies

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  • Hello Maggie, welcome to our forum, glad that you have found it to be of use. Have you had a look at our website mpnvoice.org.uk, it has lots of very useful information on there, including videos of people talking about their MPNs, and haematologists talking about MPNs, treatments, studies etc

    mpnvoice.org.uk/about-us/vi...

    there are also lots of very inspiring real stories on there

    mpnvoice.org.uk/living-with...

    with regards to the breathlessness, this can be a side effect of Hydroxycarbamide, affecting approximately one person in 100 up to one person in 10, this can be due to: your red blood cells drop too low (anaemia) so you may notice that you are breathless and tire easily. A rare side effect affecting approximately one person in 1000 to one person in 10,000 is lung reactions, consisting of abnormal substances in the lungs, fever and breathlessness and inflammation of the air sacs in the lungs.

    You are advised to report these symptoms to your Dr, but you have already done that and had a x-ray, so that's good, once your Dr has the results he/she can advise you further. It's a good idea to write down all your questions before you go to a consultation, that way you won't forget to ask something and it will help keep you on track, it's very easy to go onto another subject, writing a list of questions also helps the Dr/consultant as they can see what you want to ask, and you can also write down notes.

    Let us know how you get on. Best wishes, Maz

  • Thanks for the advice Maz and the warm welcome

  • Hi Maggie-ol , sorry to hear you now have joined the 'club' of PV+ , your journey sounds exactly like mine only 1 year behind me. I too have had the breathlessness feeling, also x-rays with nothing showing up, just be positive about the whole thing , write down questions for your specialist ( I always try to ask important questions) and you will be coping sooner than you imagined when you got your diagnosis, it is scary at first isn't it. Courage dear one we are all in the same boat paddling like mad, all good wishes. June

  • Hi June, it is a bit daunting after the diagnosis but on the other hand there was a sense of relief that there is actually a valid reason for the symptoms I had and the way I was feeling. My husband had a terrible 2016 due to various health issues and I had been chief nurse and bottle washer! Also myself and my sisters care for our Mum who has Alzheimers and I had put the way I was feeling down to stress. I went to see my GP as I was having palpitations and didn't mention any of the other symptoms I was experiencing. The blood tests he did flagged up a problem and after repeated test he referred me to Haematology. I'm so relieved I made that appointment!

  • we must be sisters ! similar pattern mine, I was diagnosed because I had had a gastric bypass, quite random eh? also my family have lots of health problems and I also thought my symptoms are stress related, we can't get along forever thinking we are ok and all down to stress. Look after yourself , without us our families will be less able to cope , we are the backbone don't you think good wishes June.

  • So true June, I'm trying to listen to my body more than I have done up to now, that ironing can wait another day if I'm having a "tired day"! Margaret

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