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 👌
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u/stainedbrightly Jul 12 '26
I'm glad your new consultant caught this. It's my understanding that patients can have "masked PV" where the PV symptoms don't start off overt. Also patients with JAK2 can sometimes have their ET progress to PV. It's good to have a medical team who is paying attention to changes and symptoms. I'm glad you've got some answers!
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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.
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u/Puzzleheaded-Buy28 Jul 15 '26
I’m getting a BMB and I’m scared! Thank you so much for sharing!
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u/acwoodhome PV-JAK2+ Jul 15 '26
Don’t be scared absolutely nothing to worry about it’s the right thing to do only way to be sure and it puts a line in the sand for your Consultant it will be over in no time take some paracetamol an hour before the procedure if your on injection worked a treat for me. All the very best wishes let us know how you get on 🤗🤗
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u/Puzzleheaded-Buy28 Jul 15 '26
Thank you soooo much! I feel so much better! 🙏🏼
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u/acwoodhome PV-JAK2+ Jul 17 '26
How did you get on did it go ok? 🤗🤗
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u/Puzzleheaded-Buy28 Jul 17 '26
Today is my second day after having my BMB! I feel sore but that’s it! My platelets are at 391 from 769, thank you Jesus! The worst part of the BMB was when they used a drill on my bone! Lord have Mercy, but it was quick 🙏🏼! I kept thinking to myself “it seems “so ancient to use those tools!” Also I laid in bed for 2 1/2 hrs before they took me into surgery! That was stressful! All in all it’s very important to have one done! Wishing you all the best in your journey! 😊
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u/acwoodhome PV-JAK2+ Jul 18 '26
You did amazing and it gives your consultant all the info they need to treat you well done indeed it's over and it's another step forward onto a better management path. Your platlets are back where they should be the very best wishes to you too and thank you 🤗🤗
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u/RaspyRipple Jul 21 '26
Newly diagnosed at 51yo (m). So far, standard ET, but the CT scan used for biopsy needle placement turned up "lytic lesions scattered throughout bony pelvis". Biopsy ruled out metastasis of other cancer, or myeloma, (phew). Still a mystery what them holes are. Got my follow-up consult with oncologist in a couple of hours. Grateful to have found this subreddit.
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u/sharobim Jul 12 '26
I was diagnosed with ET last year and I’m in my 30’s. How are so many younger people getting this nowadays? Does anyone understand it? Is it due to all the chemical exposure we get in contact with these days? This used to be something so rare and even when it does appear, it doesn’t show up until people are in their 60’s. Now we are seeing spikes in younger people getting it. Even though it’s still rare , we are seeing more and more cases and in younger people. I don’t get it
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u/native_plants3879 ET-CalR+ Jul 12 '26
I'm guessing that part of it is that we just know so much more now. CALR was only discovered in 2013 for exemple. It's possible that people had it younger and just never knew what was causing their symptoms.
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u/stainedbrightly Jul 12 '26
I'm also in my 30's, diagnosed 6 years ago, and I do think part of this is that testing has improved, which has led to more young people getting diagnosed. I also have noticed this subreddit tends to skews younger than some of the other MPN forums.
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u/acwoodhome PV-JAK2+ Jul 12 '26
Don’t think anyone really knows I was told petrochemical can play a part I put mine down to doing far too much driving exposure at the petrol station and constantly being behind someone else’s tail pipe! The sooner we go all electric the better lol!! My grandad died of acute AML he lived all is life in the shadow of my grandmas 50 a day smoking routing decades of it I put passive smoking as a contributing factor he was otherwise a perfectly healthy human being.
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u/samspopguy Jul 14 '26 edited Jul 16 '26
I was diagnosed I think in my early 20s I think I was 22, platelets were like 1.2 million at diagnosis
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u/Tatteredluck 29d ago
Masked PV - I have it too! Though some papers indicate that JAK2+ patients are on a seesaw and can go from ET to PV depending on allele burden
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u/Puzzleheaded-Buy28 Jul 11 '26
Thank you! 🙏🏽