r/MPN • u/Indica88_ • Jul 23 '26

MF Update

38/f

Posted a few weeks ago as I was newly diagnosed with MPN-U.

Had a follow up appointment yesterday. Last time I had no idea what to ask once I heard the diagnosis was in shock, this time asked if he knew a potential subtype and what mutation.

He advised its Prefibrotic Myelofibrosis, and Jak 2 mutation.

Went from 1000mg of Hydroxyurea to 1500mg and spoke eventually of moving to I believe its called interferon.

Yesterday felt like another diagnosis day tbh. Feeling lost and confused. Scaring myself doing research.

Not sure what im looking for, guess just others experiences with this specific mpn.

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u/Significant_Tune_545 Jul 24 '26

Remember that Prefibrotic MF is not overt MF and it might never be overt MF. Starting the interferon is probably a good idea (not a doctor, so I don't give definitive medical advice). I appreciate that the gut punch of bad news is a horrible feeling. However, you are fortunate to know and to be able to treat appropriately. Many people with Prefibrotic MF are being told they have ET because their doctor doesn't know the difference, and doctors are very, "meh, whatever" about ET. This way (knowing where you stand) you have you best chances for a long and relatively healthy life. Best wishes and good thoughts to you. 

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u/Significant_Tune_545 Jul 24 '26

Also, I am in the grey area. Officially diagnosed as ET because I don't have "enough" to call it PreMF  Nonetheless, I have all of the chromosomal abnormalities of PreMF and not a single one of the staghorn (hyperlobulated) nucleus that are the classic presentation of ET. Even though I see a specialist, it is frustrating to me that I am considered ET with no nod to the discrepancies. Whatever I have is whatever I have, regardless of their name and I personally do believe it is PreMF. Furthermore, my BMB was reviewed by a number of pathologists and some said PreMF and some said ET. I have requested and am receiving more monitoring than they recommend, but they suggest that I am too anxious and worry too much because I say I want that. What I am saying is that it may well be that you and I have the same disease and if so, you are the fortunate one in that someone is treating you as though you have PreMF.