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

Posted by tleona3024 @tleona3024, Dec 8, 2024

Hi
My mom (74) was diagnosed with PV (aug 2024). Hemotologist believes it may have had PV since 2022. She did the Jak2 test and she’s positive. She did the bone marrow biopsy and she’s done two phlebotomies and started HU medication 500mg x 3 a week. Also takes baby aspirin daily. The first phlebotomy she tolerated. The second knocked her socks off. Doc stopped phlebotomy to see how the medication works only. She just did blood work and hemacrit is increasing (.49), doc targeting under .45. In Oct 2024 it was .43
I suspect that doc will increase meds.
Anyone else in a similar situation? Can PV be managed without phlebotomies?

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Mentor
Lori, Volunteer Mentor | @loribmt | Feb 17 11:52am
In reply to @jerrel "I am 65 and 14 years post left side stroke. Great rehab and I was back..." + (show)
@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

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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?

REPLY
1 reply
jerrel | @jerrel | Feb 17 2:44pm
In reply to @loribmt "Welcome, @jerrel, though I see you’ve been a member for several years but this is your..." + (show)
@loribmt

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?

Jump to this post

I have wondered as well but I had a different PCP at the time. I saw him regularly and he never mentioned levels.
I'm curious, my paternal grandmother died of leukemia when I was age 4. Might there be genetic factors?
Thank you for your prompt response.

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Feb 17 6:42pm
In reply to @jerrel "I have wondered as well but I had a different PCP at the time. I saw..." + (show)
@jerrel

I have wondered as well but I had a different PCP at the time. I saw him regularly and he never mentioned levels.
I'm curious, my paternal grandmother died of leukemia when I was age 4. Might there be genetic factors?
Thank you for your prompt response.

Jump to this post

From my understanding PV doesn’t run in families. It’s usually caused by an acquired mutation in a gene. But reading through literature, there can be a genetic component in some families where an altered gene gets passed down which can leave family members with an increased risk of developing PV but not inherit the disease itself.
When you were diagnosed with PV were you tested for an underlying cause, such as a JAK2 mutation?

REPLY
rmegg | @rmegg | Feb 18 6:06am
In reply to @jerrel "I am 65 and 14 years post left side stroke. Great rehab and I was back..." + (show)
@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

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.

REPLY
jerrel | @jerrel | Feb 18 11:20am

I have been prescribed Inegra, which is a combo of Iron and Vitamin C and is supposed to aid in stomach absorption. I just read detailed instructions on taking an hour before or 2 hours after a meal. I wonder if I am eating breakfast too early after morning meds? I am taking it 2x daily and my last test showed I am still slightly below the normal range.
I will try to notice the clock better. Show of hands, who is exhausted with how many pills we need? They help and they're certainly better than the alternative.
Back to Lori's question, I know I have a mutation from the mother cells, but I honestly don't recall if it was a JAK2 mutation. I have an upcoming appointment and will certainly ask. Thanks for the helpful feedback.

REPLY
albertedward | @albertedward | Feb 19 9:45am

In the beginning I had just phlebotomes ever week and each time it got longer and longer until one day it was 5 needles in my arms and 2 hrs long .then with more hydroxarea increased over time everything came into spec.But every one is different.Now on jakifi and working great.

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