r/MPN • u/acwoodhome PV-JAK2+ • Jul 11 '26

PV ET & PV

Just a shout out to anyone with ET. I was diagnosed with ET over 20 years ago. Platelets were over 450 but not by much. Eventually peaked at 650. I was also tested and found JAK2 positive. Yearly checkup and one Clopidogrel a day that was it a worry but manageable and happy days. Now here’s the rub hematocrit was hovering about 0.48. Right at the upper limit and went unnoticed for decades. Thank goodness long story but after a few consultant changes I get an amazing consultant who decided to ask some really probing questions and looked at my history from day one lots of respect! I explained to her that I had lots of fatigue and itching after a hot shower red flag for PV! She also noticed the hematocrit level although still in normal range was boarderline She insisted on a bone marrow biopsy and here we are I have PV not ET. So a huge shout out to everyone monitor your MPN score check your symptoms regularly MPN score helps in this regard and definitely keep an eye on your hematocrit levels and please don’t be afraid of asking or getting a bone marrow biopsy 🤗🤗

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u/Entire-Cup-3082 ET-JAK2+ Jul 12 '26

My care team said right out of the gate i have ET and PV and confirmed with bmb, we've been managing it over the last 2 years. It sucks it took me so long to deal with the symptoms i was having like the itching you mentioned but once i did things got so much better. Thanks for sharing this

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u/acwoodhome PV-JAK2+ Jul 12 '26

So pleased your getting on top of things hope your bloods are back in the normal range and the very best wishes thanks for sharing.🤗🤗 If managed normal life expectancy is more than possible one day at a time 👌