Is it possible to have both ET and PV as I have symptoms and blood counts associated with both

[steve_m]

[rubyrubyruby]

Yes. I was diagnosed with ET last year and now have high red blood cell count too which is a symptom of PV. When I said to my consultant does that mean I could now have ET and PV she said yes.

Hope this helps.

[quonut]

Yes again, i have elevated platelet count (ET) and high red cell count (PV), my consultant refers to my condition as polycythemia vera.

[nivana]

Hi; yes you can have both ET and PCV - I was diagnosed with both over three years ago. Good luck,

[jane13]

yes, me too, I understand that there are intermediates between the "classic" MPDs

[Meatloaf9 in reply to jane13]

Hi jane, I believe I may be in the same boat. I noticed that your post is dated 5 years ago and I am wondering how you are doing these days. Thanks

[jane13 in reply to Meatloaf9]

Unfortunately now MF, on Ruxolutinib. How about u?

[Meatloaf9 in reply to jane13]

Hi again Jane, my et is just now turning into pv, worried. I am 68 and understand that things change much faster at my age.

[jane13 in reply to Meatloaf9]

mm good luck, at least you still have one category between u and MF! Wish I had taken more hydroxy and had fewer venesections as this is the only thing I can think of (other than earlier Ruxo, which not available on NHS) that might had slowed down my transition to MF

[Meatloaf9 in reply to jane13]

I assume that you are in the UK. I am in the states. I thought I read on other posts that Ruxo is available for free from the NHS. I checked the prices in the states and the cheapest price I can find is about 7,000.00 usd for a month's supply. I guess I will just have to burn that prescription when the time comes. God bless you and stay well.

[catkinspolymer]

yes ,

I started with ET in 1996 and now have "ET Evolving primary polycythemia JAK" V671F negative. Seem to mean I know need venesections once every 6 weeks

all the best town crier

[RebeccaLubitz]

That is interesting, that you all feel you have both. I have ET and have read a lot of research articles and have never read about people having both ET and PV. I do know that everyone I know that has PV, have elevated platelets and elevated WBCs. I will try to find some research on this and if I find any info, I will share it the group.

[StanM in reply to RebeccaLubitz]

I was recently diagnosed we PVR (jak2 positive )and my red cell count is high which was brought down by blood letting and my plates remainder high which is being reduced by chemotherapy tablet so your not alone I am still trying to get a grip on the whole thing and what it means. it wasn't much help when I was told that only 1 in 1.1 million has this combination.

good luck and keep in touch

Stan

[NewBloom]

Hi, I was diagnosed as Primary Pv with ET, this was Oct 2012. It was explained as JAK2 positive PV with elevated platelets known as ET.

[Hidden]

Me too. My ET diagnosis was about 3 years ago & PV whooah, must be bout 8 years now. My haem only now refers to my condition as simply PV. It seems for a lot of us the 2 go hand in glove-elevated reds together with elevated platelets & I get a reading for both at consultations with equal attention being given to both. My WBC is normal tho. Hope this helps, look after yourself, Polly

[Cja1956]

I was diagnosed with ET 11 years ago at age 52 with a platelet count of 600,000 and the Jak2 mutation. About two years ago my doctor told me I also have PV.

[Marossi]

I have had platelets since 2011 and was diagnosed with PV in October 2017 when a blood test showed high red blood cells as well as high platelets. I do sometimes wonder what this means in terms of progression.