← Return to My mom has Polycythemia Vera: Can PV be managed without phlebotomies?

Discussion

My mom has Polycythemia Vera: Can PV be managed without phlebotomies?

Blood Cancers & Disorders | Last Active: Feb 19 9:45am | Replies (36)
Comment receiving replies
@jerrel

I am 65 and 14 years post left side stroke. Great rehab and I was back on my feet in a week (with assistance). My PCP began following my RBC numbers and referred me to a Hematologist about a year ago. She did the CT and bone marrow and determined that I should do phlebotomies every 4-8 weeks based on numbers. So far, so good in the management without medication. But I have low iron and potassium even with supplements. BTW, I have found Effer K (like alka seltzer in water) and Integra (iron supplement with vitamins) to be convenient, but not yet getting me to the proper amounts. My doc said I may require iron infusions and I was curious about others' experiences with this background. I was already taking Plavix because of the stroke. Thanks

Jump to this post

Replies to "I am 65 and 14 years post left side stroke. Great rehab and I was back..."
Lori, Volunteer Mentor | @loribmt | Feb 17 11:52am

Welcome, @jerrel, though I see you’ve been a member for several years but this is your first time posting! ☺️ I’m glad you recovered so quickly from your stroke. I’m sure the physical therapy took perseverance on your part but it paid off.
Having phlebotomies regularly to keep elevated hematocrit lower with PV can affect your iron and electrolytes. Thank you for sharing what has helped to keep your levels somewhat back to normal…though not quite. It looks like your doctor is considering iron infusions to help with the depletion. We do have other members who have iron infusions after phlebotomies. A few have talked mentioned their how the infusions have worked for them in this discussion
https://connect.mayoclinic.org/discussion/polycythemia-vera-and-low-iron/
Does your hematologist oncologist feel that your PV may have been the cause of your stroke?

VIEW AND REPLY
rmegg | @rmegg | Feb 18 6:06am

I had an iron infusion and it worked for the iron but again I got low on iron. I am now taking iron 3x a week and I think it is working better. Still having phlebotomy about once a month.

VIEW AND REPLY