Today's update : Some potentially good news. Saw... - MPN Voice

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Today's update

HockeyFan47 profile image
6 Replies

Some potentially good news. Saw my PCP this morning and he went over all my labs. Counts for RBC are slightly high but he's not concerned as with PV counts would gradually increase overtime not go up and down like mine have. Additionally he said they'd be more out of range. He said he has never had a PV patient before but he has had secondary cases and mine looks similar. He did not seem to worried and hasn't since my Jak2 came back negative as with my age it's rare too.

He did run the EPO so I will get that test back soon hopefully and I'll be able to almost certainly confirm whether or not this is secondary if it's high or normal in combination with my Jak2 Negative test.

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HockeyFan47 profile image
HockeyFan47
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hunter5582 profile image
hunter5582

Good news. Do please let us know when the EPO results are in.

Ovidess profile image
Ovidess in reply to hunter5582

What's EPO, Hunter?

HockeyFan47 profile image
HockeyFan47 in reply to Ovidess

EPO is erythropoietin a protein in the kidney responsible for producing red blood cells in the bone marrow. In PV EPO is low, in Secondary it's usually high or normal levels. It's a minor criteria for PV diagnosis. Since I was Jak2 Negative I did the EPO blood test. If that ends up coming back in the normal range or high it's pretty much a 99.9% chance it's secondary and not PV

hunter5582 profile image
hunter5582 in reply to Ovidess

EPO = Erythropoietin, a ligand that triggers the body to produce RBCs. EPO is produced by the kidneys in response to hypoxia.

HockeyFan47 profile image
HockeyFan47 in reply to hunter5582

Just got the EPO it's 6.5

hunter5582 profile image
hunter5582 in reply to HockeyFan47

My lab shows a reference range for EPO of 2.6 - 18.5 My EPO has ranged from 5.7 - 7.9. Low-normal EPO with erythrocytosis is consistent with a PV diagnosis. Your situation is a bit harder to interpret. This is well beyond the scope of a PCP to interpret properly. Suggest that you get a referral to a MPN Specialist to ensure an accurate diagnosis one way or the other. mpnforum.com/tsr-the-list/

Please let us know what you learn and how you get on.

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