Hi everyone — I'm 39, diagnosed with PV about a year and a half ago, JAK2+, high allele burden (72.4% as of early 2025). I've been on Besremi since March 2025, currently at 450mcg and approaching the 500mcg max.
My CBC response has been really strong — WBC and platelets have normalized dramatically, HCT responding but still a work in progress — but I've been dealing with moderate to significant hair loss since early in treatment. I did seem to be recovering somewhat over the summer when my dose was stable at 150mcg for a few months, but as escalation has continued the loss has picked back up. To be honest this has been difficult for me emotionally, and I'm trying to set realistic expectations since I'm planning to stay on Besremi long-term.
A couple of specific questions for anyone who's been through this:
Has anyone experienced hair regrowth *while still on* Besremi or another ropeginterferon, rather than after stopping? Especially at higher doses?
Did things stabilize or improve once you hit your maintenance dose and stopped escalating?
I've done a lot of research and can't find much data on this specific question — the trials don't really track hair as an endpoint. So I'm really looking for real patient experiences. Any input appreciated, even if your answer is "no, it stayed thin the whole time." I'd rather know than wonder. Thanks!💙