Symptom Management

[WYLDEMANSWOMAN]

52(F) diagnosed with PV JAK2 = V617F June 2022

Since being diagnosed, my numbers have reacted well.

- 4 venesections.

- I take 2 x 81mg low dose aspirin every day since May 2022.

- Started Hydroxyurea Sept 2022; made the typical adjustments until May 2024

- Started Besremi May 2024 and titrating down the Hydroxyurea. Made the switch because HU wasn't impacting the numbers as well and I still had debilitating symptoms (brain fog, fatigue, migraines, aches/pains, vision impairment, etc.,)

With increasing Besremi 50mcg every other week, I got to 400mcg. I guess I started 2nd guessing myself, I requested to go back to 350mcg and now I am at 300mcg. My numbers were a little LOW when I was at 400mcg (WBC = 2.8; RBC = 3.63; HGB = 11.4; HCT = 33.7). I did have 5 good days out of the 14. @ 300mcg, I'm back to 1.5 good days in the last 7.

My question is, has anyone gone through BESREMI to the 500mcg and still had symptoms? Did you switch to JAKAFI? Did it help?

[BuckskinAsia]

Yes, I’m taking 15mg2x a day, & my numbers are all great! My WBC is still a little high but my Dr is not concerned. No major side effects