A Guide to Polycythemia Vera

In recognition of MPN Awareness Day today and Blood Cancer Awareness Month, MPN Cancer Connection is proud to share A Guide to Polycythemia Vera (PV) with our MPN community.

This free guide helps patients and caregivers understand PV, explore treatment options, and prepare for conversations with their healthcare team.

📖 Read or download your free guide: https://mpncancerconnection.org/2026/09/polycythemia-vera-guide/

Please share with someone who could benefit!

#MPNAwarenessDay #BloodCancerAwarenessMonth #PolycythemiaVera

u/PVReporter — 1 month ago
▲ 18 r/polycythemiavera+1 crossposts

The FDA has approved MIMRYLO (rusfertide) for erythrocytosis in adults with polycythemia vera.

I run PV Reporter and wrote a patient-focused breakdown covering how rusfertide works, the VERIFY trial results, phlebotomy burden, safety information, and questions to ask your hematologist.

Article: https://pvreporter.com/fda-approves-mimrylo-rusfertide-polycythemia-vera/

This is for education and discussion, not medical advice. I’d be interested to hear what questions other PV patients have about this treatment.

u/PVReporter — 1 month ago

Divesiran Cuts Phlebotomy Need in Phase 2 PV Trial

New Phase 2 results for divesiran could matter to people with PV who require frequent phlebotomies.

In the SANRECO trial, 88% of divesiran-treated patients kept hematocrit below 45% without phlebotomy during weeks 18 through 36, compared with 19% on placebo. The every-12-week group also showed an 81.3% response rate.

These are promising topline findings, but divesiran remains investigational. Full data and a larger Phase 3 trial are still needed.

https://pvreporter.com/divesiran-cuts-phlebotomy-need-in-phase-2-pv-trial/

u/PVReporter — 2 months ago
▲ 30 r/polycythemiavera+1 crossposts

How I Achieved Complete Molecular Remission From Polycythemia Vera (PV)

Seven years. Two medications. Five failed doctors.

When I was diagnosed with polycythemia vera in 2009, no one told me remission was possible. The only treatment I was offered, phlebotomy, guaranteed it wouldn't be.

Today my blood counts are normal. The molecular markers driving my PV are undetectable.

I just published the most personal article I've ever written. It covers how I got here, what it cost, the moment at ASH 2015 that changed everything, and what I want every PV patient to know.

This isn't a typical outcome. I won't pretend it is. But most patients are never told deeper responses are even on the table, and they deserve to know.

Read the full story: https://pvreporter.com/polycythemia-vera-molecular-remission/

u/PVReporter — 2 months ago