PV to myleofibrosis signs

[Chris1919]

Hi I've been reading up and just wondered if people who had had PV and it had developed have any views as to what their early symptoms were ? I'd be interested to know as I guess that's one of the big risks..also how long people had PV before it changed - I've seen some people it was really quick. Thanks ! 

[Mirribell]

I had ET for 15 years before it developed into MF in November 2014. The early symptoms will vary with individuals. I had severe night sweats and spleen pain. 

[Chris1919 in reply to Mirribell]

Thanks that's really interesting. I worry that I bruise when I have blood taken sometimes but I think I'm just being paranoid !!

[beetle]

Again I can only answer for ET but mine was 18 years when a new consultant looking at my blood result history and said "this looks like signs of fibrosis". This group of diseases is SO individual though. Comparing ourselves with others is probably a fruitless exercise. One person may never progress while another progresses over decades and still others over a matter of months. It is something I consider not to be worth worrying about as the statistics for progression are quite low in both ET & PV. My advice would be to live every day to the full and don't spoil it by worrying about what might take place in future. We are living in an era of enormous medical progression so prognoses may change and possible cures might be round the corner. Get excited about that instead!  Very best wishes, Jan

[eire in reply to beetle]

Very well said. We are definitely all very different and special in our own way!!!!

[knightpost]

I have to agree with beetle - we all 'acquire' our mpn in different ways and over different length of time I suspect that I've had my PV for a lot longer than my specialist thinks (he reckons I've had it for about 12 years but I think it is nearer 17-20 years) I was diagnosed last year. As for the bruising Chris1919  I'm afraid that come with the territory of having regular/frequent blood test  some nurses and doctor are better at getting the blood out than others. I've had my arm looking like a battlefield and other time just a wee mark. Keep well everybody!!!

[linds]

Hello,

Bit late answering this post but been enjoying a cruise!   I have MF after PV and the transition seemed quite quick to me - 2 years after diagnosis, but then I might have had PV for ages before realising.   The point I want to make is this, even if you find MF is your future, try not to worry as life is very good in my case anyway.  It really does not mean a bad outlook.  I take Rux and that has made a world of difference to me.   I admit the year before Rux was not a good one but that is in the past now and I live every day as if nothing is the matter.   I do get tired but then I am 68 so entitled to be so don't you think.   My hardest task is to get back to walking like I used to and I am getting there.   (Get a bit breathless)   Please don't worry about what might happen until it does and then allow your medics to tackle it.   I don't know what the future holds but then none of us does but I bet it's going to be long and good.   

All the very best to you.

Linds x