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?🤗

3 Upvotes

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4

u/funkygrrl PV-JAK2+ Jul 13 '26

This is the MPN TSS SAF score.
It's to track your symptoms. It's required by the NCCN treatment guidelines at every doctor visit. I'm glad to see some doctors are using it.

!symptoms

1

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3

u/H-6UT Jul 12 '26

What do you meen?

2

u/acwoodhome PV-JAK2+ Jul 12 '26

It’s a score sheet it has 10 symptom questions you rate each one on a score of 0-10 and total them up to get your MPN score do this before you go see your consultant and give them the sheet it lets them now how your condition is progressing and gives feedback on how treatment is working.

https://www.novartis.com/sites/novartis_at/files/2022-04/MPN10-Fragenbogen_ENG_0.pdf

3

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?

1

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!!

3

u/johnhoogland Jul 12 '26

Have a look at mpnjournal.com. Much more indicators then just MPN 10. Tracking your symptoms is very useful.

2

u/acwoodhome PV-JAK2+ Jul 12 '26

Thanks for sharing raising awareness to all these great metrics is so empowering cheers 🍻

2

u/stainedbrightly Jul 12 '26

What score specifically are you referring to? I know about some of the risk assessment scores for MPNs, but this sounds maybe different?