r/polycythemiavera

Hi everyone,
I’ve been diagnosed with PV 2.5 years ago and got therapy with aspirin and phlebotomy. Last year in November I got phlebotomy and after that I had a surgery on my nose, where I also lost a lot of blood.
Since then my hematocrit was at 0.38 (November 2025). It started to get higher month by month until it was 0.44 (April 2026). Since then it went down to 0.39 (Mai 2026) and end of last month it was lower again at 0.38. But to keep in mind that my last phlebotomy was in November last year.
My doctor said everything looks normal.

Has anyone had a similar case in the past or any idea why this is happening?

Has anyone on here had an increase in neurological issues since starting treatment?

My mom (71 yrs) was diagnosed with PV about 6 months ago. She had started the pegasys shot, but had a seizure not long after she started it. Shr has since switched to hydroxyurea. She has been on anti'seizure meds since her pegasys shot.

About two weeks ago, she had some sort of neurological event. She was conscious and describes it like she lost control of her limbs and they were shaking like an earthquake. Her legs then lost strength and she fell down. After the event, she lost most of her strength in her legs and could barely lift them for a fee days. Her strength has mostly come back and she can walk again, but the hospital and doctors can't seem to pinpoint what happened. Her tests are not showing definite signs of a stroke or seizure. She is having some sort of cognitive fog- issues thinking of words, etc. She is taking blood thinners and has a filter to prevent clots, so stroke SHOULD be less likely.

Has anyone experienced something like this or other increased neurological issues during treatment? Any other suggestions of what she should look into? It's just frustrating that there has been little in terms of answers or help.

Just started Besremi for my PV. First dose went well, mild flu symptoms overnight but that’s all. Two weeks later second dose bumped 50mcg and after about two days l have soreness at injection site and a few inches around it. (No flu symptoms this time) Anyone experience this? Seems like it may be normal but l’m a worrier.
Thanks in advance

Hi all,

I probably have PV. I say probably because so far all of the tests point in that direction and I have some of the symptoms as well. I have an appointment with my doctor next week and still waiting on the JAK2 test.

Anyway, the most annoying symptom I have is tinnitus constantly in my right ear. Had this for about 4 years. Has anyone else experienced this - and does it go away with treatment?

Thanks!