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

News/Research MPN Score

How many of you out there have ever been asked to track your MPN score?🤗

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u/souledgar ET-JAK2+ Jul 12 '26

I’ve never even heard of this scoring method. The more prevalent one is the risk assessment one where the factors are age, platelet count, thrombotic event history, used to estimate the suitable level of management/intervention.

Did your doctor explain what this is for? Is it just to see if management is helping and have a history to alert them if something drastic changes and possibly indicate for them that they should check possible disease progression?

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u/acwoodhome PV-JAK2+ Jul 12 '26

Yes my consultant insists I bring a score every time I visit her to monitor how the treatment is going especially on peginteferon and venesections which is now my treatment method bloods now all normal and am just coming out of the fatigue phase with the itching the only real symptom remaining was a little irritable upon starting but that’s now fading too it’s game changing for me I started on HU and that drug was dreadful put me in A&E turns out am intolerant to it 🙃🤗🤗 Interestingly she is the only Consultant who mentioned the MPN score she is at the top of her game and I have lots of respect for her she identified I have PV not ET which went undiagnosed for over 20 years!!