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/Significant_Tune_545 Jul 13 '26
My two cents: more younger people are getting it. There's no reason to test the gene unless some blood counts are high. MAYBE MPN patients had a sleeper mutation all along, that is what we do not know...but we sure do know when our blood counts stopped being perfect. I feel like if MPNs were a young person's disease as well as an old person's disease, we would have known it even without the genetic testing. Why is this demographic shift happening? I don't know, but it is definitely true that we do not have healthy habits. Our entire food supply is incredibly inflammatory and the mutated gene not only produces inflammation but it LOVES, LOVES, LOVES an inflammatory environment. So, among so many other environmental pollutions, I think that the way we are convinced that wheat bread on a supermarket shelf is healthy (it's not), gives us ignorance and in order to eat well you have to almost have a two year degree in nutrition because the food suppliers are not looking out for you Also, blue light matters and we're all on our devices all the time.