Hello everyone , I haven’t posted anything on this forum for sometime. I was diagnosed in 2019 with ET my platelets were about 600 . My symptoms being very itchy particularly after a shower and bathing , a burning sensation in my feet and hands. Then a change in my counts, high HB, PCV, RC and WC all raised . My haematologist said this is a masked PV . Has anyone else had the same experience? I have already had two venesections and have one more to go . Already my PCV has come down from 50 to 45 and HB from 172 to 148 . I actually feel so much better and my symptoms have improved greatly. What is the most challenging aspect of A diagnosis of PV ?
Best wishes
Linda
Written by
Kiki64
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Hi Kiki64. I am in the diagnosis phase myself (possible ET). I do not have any personal experience with PV, but when I was being evaluated, there was a brief period where my general hematologist thought I might have PV since my hemoglobin and hematocrit are high-normal, but my MPN specialist discredited his theory and told me the diagnostic criteria for PV was a hemoglobin of 16.5 or greater.
If your red and white counts were normal at the time of your ET diagnosis, it is possible that you progressed to PV rather than had masked PV.
My specialist told me that ET and PV are more similar than they are different these days in terms of prognosis and quality of life due to treatments available these days, although I believe PV generally poses more complications since more cell types are affected.
I’m sure there are people in this forum living with PV who will provide deeper insight to your question.
Hello Kiki64I was diagnosed in 2019 after I went to the GP with a swelling below my left ribs. That turned out to be my spleen and a blood test revealed platelets of 800, which a review of my medical records revealed had been high for at least 8 years. I also had normal hgb but low iron stores and a mixture of large and small red blood cells and normal HCT. A CT scan also revealed a splenic vein thrombosis. My diagnosis was ET but when my BMB results came back these confirmed an MPN more consistent with PV.
My Dr, who does specialise in MPN, said that as my clinical presentation was ET and treatment was the same for both in my case (Peg-Interferon and blood thinner) then he would stick with a diagnosis of ET, and that is what it has been on my clinic letters ever since. Until, after my last clinic appt 4 weeks ago when I spoke to a different dr, my clinic letter arrived a week later with the diagnosis stated as PV. There had been no discussion about the diagnosis, my bloods remain stable- in fact my platelets are now on the low side so I am reducing my Peg dose. My HCT has always been normal.
My guess is that what I have counts as masked PV and I suppose this means that at some point I may have blood counts more consistent with PV but without having the BMB results at initial diagnosis, this would look like ‘progression’.
I am lucky in that any symptoms I may experience are intermittent and mild and my biggest challenge has been not worrying about the future and possible progression or worsening symptoms. My fairly
sanguine response to an un-discussed reclassification of my MPN from ET to PV makes me think I’m finally getting better at that!
Hi , thank you very much for replying to my post. You’ve certainly had a hard time of it all . Your counts seem to be very similar to mine . I too worry about the future and progression . I’m struggling with the diagnosis .
Yup! Though there was no reference to ‘masked PV’ just a comment that it had gone a roundabout way to show itself.
I was diagnosed with ET about eight years ago as my platelet count began to climb. My initial BMB was inconclusive - an ‘unclassified MPN’ - but treated as ET.
A few years on and there was a rise in my HCT levels. A further BMB and other tests confirmed PV. I was started on venesections but when my platelets eventually hit 1700 I went on to Hydroxy and that has had amazing results. My platelet count tumbled and is now more or less within normal range and I stopped having the venesections which were becoming more challenging.
I’m not sure a PV diagnosis is any more or less challenging than one of ET. Everyone’s experience is so individual. There is slightly more in the mix especially if you have a platelet issue too but having the condition well managed is actually what matters. Hydroxy made a huge difference to me (when I eventually went on it - a case of less angst more action!).
Post . My platelets have gone up slightly because of the venesection they say . What you say about Hydroxy is very encouraging . There appears to be a very fine line with ET and PV .
I was officially diagnosed with ET after about 5-6 years of increasing platelet counts (most recent reading at 940) - my HGB and HCT are normal but my WBC is high and my EPO basically non-existent - I've also had some itching issues - thanks to MPN Voice, I was well prepared to push my MPN specialist as to whether what we are really dealing with is masked PV and not ET. My hematologist (an MPN specialist) stated that given my current state the treatment would be the same regardless but he was going to go ahead and get a baseline BMB to 1) help more conclusively establish what we are actually dealing with and 2) have a baseline for future if anything changes/progresses. The BMB definitively classified it as ET (for now) although m doctor always remind everyone that all MPNs are related and especially for ET and PV there can be movement from one to the other...
Hi thank you very much for your reply to my post. My haematologist has never mentioned a BMB . It definitely makes sense to determine a diagnosis and to get a baseline . I will see what happens after last venesection .
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