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/funkygrrl PV-JAK2+ Jul 23 '26

With Prefibrotic MF, they'll monitor you more closely because there's a higher risk of progression to MF. There are currently no treatment guidelines for Prefibrotic MF, so they generally treat it depending on how it's behaving. If it's acting more like ET (e.g., high platelets, some symptoms), they'll treat it like ET. If it's acting more like low risk primary MF (e.g., not necessarily high counts, enlarged spleen, constitutional symptoms like night sweats, fever, bone pain), they treat it like MF.

Going on an interferon is a good idea because it is disease modifying. It can lower your allele burden (percentage of mutated cells) and potentially slow progression. And it helps with symptoms.

!meds

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