Yet again I would love some advice. I was diagnosed with ET 9 years ago at the age of 58. Until recently I was on 500 mg Hydra daily and aspirin. Then my hct started to rise and at my haemo appointment today was 4.9 even tho I have been on 1000 mg hydrea on Friday Saturday and Sunday for some months. Anyway I had to have a venosection today for the first time and my haematologist told me that I have now changed to PV.
I am wondering if others have experienced this as I am worried about things deteriorating and prognosis
I would love to hear from others in this situation
Thanks. Margo
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Margo18
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Hi. Yes, I was initially diagnosed with ET (although technically it was ‘unclassified’ following a BMB). Then about three years later my HCT started to rise. I was given a venesection and a further BMB confirmed PV. Like you I was worried the disease had ‘progressed’. My heam (I’m up at Guy’s) told me that the disease had just taken a roundabout way to properly manifest itself. I managed the PV on venesections alone (plus continuing aspirin) for a year or so but my platelets continued to climb and I got to the point where starting Hydroxy was a no brainer. Hope this helps.
The precise diagnosis of MPN forms is not always possible in the early days. I took hydroxy carbamide for many years beginning with a low dose and increasing over the months and years. The increases were usually due to platelets. This seems to happen to lots of us PVers.
When I was diagnosed in 1999 the doctor said "If you have to have one of these MPNs PV is the best one. I think nowadays with greater knowledge and more medicine choices all of us are in a better situation.
Wishing you well.
Hey Margo, I wouldn't worry, I have heard many stories like yours. I was always diagnosed with PV but I have always had both high red blood and platelets where as some people with PV only have the elevated RBC. I did really well on just aspirin and venesections for many years, in fact only after another op for my bladder did I feel unwell and more fatigued and after a bad experience with interferon I am now back on just venesections and doing better. I sometimes have a mini vini as we nicknamed them and I always have saline at the same time as it really helps me so don't be afraid to ask for what suits you best. Make sure you drink lots of water before your blood tests to ensure correct readings and not dehydrated. Going from ET to PV in my eyes is not a detoriation. I believe they sit alongside each other, and maybe I am wrong but that's how I see it. Big love x
Thank you all for the helpful replies. I always feel a bit down when things don’t go as well as hoped but after a while I will feel a bit more positive and your replies are encouraging me in that
Hi Margo, I know exactly what you mean. The days seem to be going well, then all of a sudden something rocks the boat - you are not alone, we all have them! I have had PV since 2012 and still managing to work on venesections only.
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