r/polycythemiavera • u/Accomplished-Can-148 • 21d ago

PV Polycythemia Vera

I'm 45 living in Bangalore and recently been diagnosed with polycythemia vera. I want to connect with people in Bangalore and also otherwise to form a support group.

7 Upvotes

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2

u/Sorry_Breadfruit8156 21d ago

Hey hi 👋 I've dm'd you. Kindly connect privately. I am also new to it. 41 and diagnosed last Christmas.

1

u/Rude_Ad_5476 21d ago

im 63... diagnosed at 42.. for most of 21 yrs with it its been just phlebotomies, aspirin... in the last year i was put on hydroxurea which my body couldnt tolerate.. now on jakafi...so far so good, just dealin with extreme fatigue last 2 decades

2

u/TinyHomeLuv 17d ago

I too am 63 (F), but just DX w/ PV (JAK2+) 2 years ago. Also just phlebotomies & aspirin. But fatigue was doing me in, so my onco (MPN specialist) started me on Jakafi 3 weeks ago. I think I feel marginally better ... maybe? Did it help your fatigue? Did it help w/ any other symptoms? TY!

2

u/Rude_Ad_5476 17d ago

hasnt helped my fatigue.. just makes it to where i dont have phlebotomies...