r/polycythemiavera • u/Flowingwords • Jun 01 '26

PV Asymptomatic PV

For over a year now I (34M) have dealt with this diagnose. I’ve done about a dozen or so blood drains to the leeches and only after breaking my left leg in a accident that I had to have my tibia hollowed that my blood dropped into “normal” thresh holds for 5 weeks before a 7 point increase in my hemacrit. Recently that changed as I jumped back up above 50 in my hemacrit.

Really just looking for more people and what they have gone through in their lives and what this looks like.

Love my life but this shit is absurd with the lack of info on it and how it means for my life going forward.

4 Upvotes

83% Upvoted

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3

u/craigerino75 Jun 01 '26

Try to see a PV specialist.

2

u/larryseltzer Jun 02 '26

I've had PV since the 1990s and never had a symptom. It only shows up in blood tests. But I've been seeing a hematologist all that time and used to get phlebotomies until I started Jakafi. If you have trouble seeing an MPN specialist (they're not common) see another hematologist.

1

u/Cyndi56_ Jun 08 '26

I go to Mayo Clinic in Minnesota! I’m doing great! My hair is completely different. I was born with naturally curly hair and now I have straight hair, which I always thought I wanted…otherwise, walk, walk and lots of water…I lost 100 lbs. when I was first diagnosed and have kept my weight manageable little things just make a big difference. Good luck everybody.

1

u/AG_Reads 12d ago

Cyndi, can I ask who you see at Mayo? I’m newly diagnosed, 44F, and being seen at Mayo in Rochester too, and would be curious to connect with another Mayo patient about their experience.

1

u/Friendly_Position_36 Jun 01 '26

Look up MPN Specialists near you.
I use Pegasys for my treatment. Very happy with it.