r/polycythemiavera

I have been diagnosed last November at the age of 36. After 8 phlebotomies in 5 months, I'm still trying to catch up with my bone marrow to reach the golden standard on my red blood count.

I did the math: my iron is almost depleted, and yet, a single phlebotomy session is overrun by my production in only about 45 to 60 days.

My fatigue is unbearable. I can't concentrate on my job. I can't go to the park with my 3 years old daughter. I can barely climb a couple sets of stairs without getting tired.

Visited 5 different doctors so far. They all said "phlebotomies only" in my case. Except for one who right away prescribed me hydroxyurea (which I'm not taking because it would be a mini chemo for decades).

My platelets are around 550k and I'm still at 53.6% hematocrit.

I live in Brazil and have even consulted with the best doctor in the field here. But no one will prescribe Besremi. I heard that is because health insurance companies bully them into not doing so.

So I'm asking you guys: do you know a doctor who will talk to me over a Webcam (I speak English, Portuguese and can get around with Spanish)? I can pay anywhere in the world. All I need is a prescription and a report explaining why other methods are not ideal (phlebotomies losing the race against the marrow and hydroxyurea not being recommended for young pacients). Once I have those 2 documents, I can go to the court and make the state sponsor the medication for me.

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:

1. Has anyone experienced hair regrowth *while still on* Besremi or another ropeginterferon, rather than after stopping? Especially at higher doses?

2. 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!💙