Polycythemia Vera and ET ? I have both

[PhilReade]

Hi I was at the Christie hospital Wednesday to see my Haematolygist I’ve been diagnosed with ET since 2015

I thought after 12 months of tests and a splenectomy I had polycythemia Vera after reading up on symptoms

I asked my Haematolygist on Wednesday he told me in rare cases some people have both and I was one of them has any one else been told this ?im Jak2 positive and on hydroxycarbamide 1500mg daily

Thanks

Phil

[Marossi]

I had elevated platelets for years before my red (and white) blood cells started climbing too and I was finally diagnosed with Polycythemia Vera. My doctor thinks I probably progressed from Et to PV. Apparently it’s quite rare but probably less rare than we think. It’s not unusual for PV patients to have elevated platelets as far as I know. But usually you have only one diagnosis.

[PhilReade in reply to Marossi]

Thanks for your reply I’m under Professor Sommervaille at the Christie in Manchester he definitely said I have 50-50 was convinced myself though I had P V in 2014 after my spleen was removed

[Marossi in reply to PhilReade]

Sorry to hear you had to have your spleen removed. Hope Hydroxyurea is successful in controlling your blood counts.

[Peter18]

I was diagnosed with PV in February 2018 and have been on daily hydroxy carb since. My nurse noted in passing, many months later, that as my platelets were also high, I had ET. Counts are all down but tiredness and brain 'fug' can be a challenge at times. Best wishes.

[ProudHarry]

Had ET for a few years then progressed to PV.

[Cja1956]

I was diagnosed with ET Jak2 positive in 2008. About 3 years ago I progressed to PV. When I further questioned my hematologist, he said my bone marrow is very active and sometimes my bloodwork looks like ET and other times like PV. Hope that helps.

[PhilReade]

Thanks for the reply is PV more dangerous than ET or both as equal ?

[clubdino in reply to PhilReade]

PV is viewed as more dangerous unfortunately.

[clubdino]

Also, I should add that I have CALR ET but for the first years I often had a high HCT and hemoglobin and it eventually leveled off. Now my HCT is normal.

[Chaz1]

My hubby officially has ET as per his BMB but also is noted as having PV and is treated with venesections & aspirin. They are less concerned about his platelets than his HCT. There is many that say you progress but there is no evidence of progression with him as yet & he doesn't meet the British guidelines for a PV diagnosis. Best of luck with your treatment x

[PhilReade]

Thanks so much for your replies

[skess13]

I was recently diagnosed as being this rare person too. I stared with ET JAK2 and now also have Polycythemiavera

[Phil1955]

hi I started with P V had my spleen out shortly after as my spleen and liver was enlarged causing pain

I was given a 12 month appointment after splenectomy but then suffered with gout and my platelets went into the 925

I was diagnosed with E T 12 months later and started on Hydroxycarbamide 1 a day

I’m now on 1500 mg daily my platelets are always just under 450 now

The professor I’m under says I have 50-50 PV and E T