Polycythemia Vera and ET ? I have both - MPN Voice

MPN Voice

10,339 members14,250 posts

Polycythemia Vera and ET ? I have both

PhilReade profile image
13 Replies

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

Written by
PhilReade profile image
PhilReade
To view profiles and participate in discussions please or .
Read more about...
13 Replies
Marossi profile image
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 profile image
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 profile image
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 profile image
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 profile image
ProudHarry

Had ET for a few years then progressed to PV.

Cja1956 profile image
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 profile image
PhilReade

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

clubdino profile image
clubdino in reply to PhilReade

PV is viewed as more dangerous unfortunately.

clubdino profile image
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 profile image
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 profile image
PhilReade

Thanks so much for your replies

skess13 profile image
skess13

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

Phil1955 profile image
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

You may also like...

diagnosed with Polycythemia Vera

that I have been diagnosed with Polycythemia Vera . They said 20% of my bone marrow has been...

Polycythemia Vera

Hi All, I was diagnosed with Polycythemia Vera last April. Since that date I have been having bloods

polycythemia Vera

suspects I have polycythemia Vera been waiting now for my appt with a haematologist to look for...

Is it polycythemia vera?

think i hv pv. My hand and feet burns which allays after drinking water. Nowadays i m sweating at...

Critical Illness cover and Polycythemia Vera

My husband was diagnosed with PV a year ago. I glanced at the Aviva policy at the time a year ago...