PRV and ET?

[Turfbeg]

Hello everyone, I'm wondering if anyone else has been diagnosed with PRV and ET? Most posts seem to refer to members having either PRV or ET. I have been told I have both conditions and take aspirin and hydroxycarbamide daily. Many thanks in anticipation of members replying.

[Pippa63]

Hi there. I have read posts in the past where members do have both. I'm sure someone will enlighten you . Wishing you well on your MPN journey

[Marossi]

It is my understanding that you are diagnosed with one or the other. I think the confusion may arise from the fact that some people with PV also have elevated platelets ( and sometimes even elevated white blood counts too). In my case I had elevated platelets for years but was only diagnosed with PV when my red and white blood cell counts started to rise significantly. It seems that some people can evolve (progress?) from ET to PV.

[Ebot]

I was originally diagnosed with ET although following my first BMB strictly speaking my MPN was ‘unclassified’. Some years down the line my haematocrit rose and a further BMB confirmed that in-fact I had PV. So I had both very high platelets and high haematocrit levels. It’s entirely ‘normal’ for someone with PV to have both these elements but the bottom line diagnosis is PV.

[Maggie-ol]

Hi Turfbeg

My official diagnosis is PV but a Haematologist did once tell me that I "crossed over" to ET

at times!

[nivana]

I was diagnosed with ET and PCV 9 years ago. Have managed fairly well over the years, but it does mean altering the hydroxy at times to get both counts to acceptable levels. Good luck and hope all goes well for you. Best wishes

[Chaz1]

Hi my husband has ET under the British guidelines & PV under WHO. So he is classed as ET with PV. He is on aspirin & has venesections which do him a world of good. So he is treated as though a PV patient but his main diagnosis has to state ET apparently. Doesn't matter which really so long as he's looked after. His hasn't progressed from one to other as diagnosed Oct 17 & I'd noticed his other levels were high & second opinion in Feb 18 started him on his current course of treatment.

[Cja1956]

I was diagnosed with ET in 2008 and in 2016, my hematologist told me I had progressed to PV. He explained that my bone marrow was very active and sometimes it looks more like one than the other.

[Ameliav]

I was diagnosed with both but apparently you can only have one . My first hematologist gave me two diagnosis and the MPN specialist only one which is PV. My believe is you can only have one

[hunter5582]

I am one of many who progressed from EV to PV over time. It does happen. There is also a continuum between ET and PV and it is not always clear which you fit into. The "poly" part of polycythemia means that erythrocytosis, leukocytosis, and thrombocytosis can all be present in varying combinations. Hope that helps. All the best to you.

[Paul123456]

You are possibly MPN-U, Unclassified. I am. Was ET with one Hem, then PV with another and finally MPN-U which I guess is on the cusp.

[Skyehope]

Hi. I thought I had both at my diagnosis but have since learnt that you really only have one but that it can be hard to classify sometimes. My haematologist says that I have "an MPN" so covers all bases. It seems to run more to PV though really.

[Angelinagaffer]

Hi I have been diagnosed with both and have the same treatment since 2015.