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

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?

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.

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?

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.

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.

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.

My husband has PV, which he’s had since 2018. He used to have to go for phlebotomies every few weeks, but after a hospital stay, he became anemic and didn’t need them anymore. Unfortunately, at his last blood test, his levels showed that he needs them again. He takes HU medications daily at 500mg and three times a week at 1000mg. One thing I’ve never understood is why his WBC is always high. Does anyone else have the same issue?

Welcome to Mayo Connect, @lisbob40 Having blood a condition like polycythemia vera (PV) can be confusing. PV is generally classified as having too many red blood cells. But the underlying condition can also cause too many white blood cells and platelets (ET). It’s only one of several blood cancers found in a condition, myeloproliferative neoplasms (MPNs), where the bone marrow contains mutations which can disrupt the normal production of blood cells. Basically bypassing a ‘shut off’ switch. This disorder can create the overproduction of blood cells, including red, white and platelets.
This link from Very Well Health is a good tutorial on MPNs
https://www.verywellhealth.com/myeloproliferative-disorders-5209654
Is your husband under the guidance of a hematologist oncologist?

I’d like to share my story, tho this may be a bit lengthy; I hope you don’t mind.
I’m a 65 year old male. I was diagnosed with PV around 5 years ago; the doctors thought that they had caught it relatively early. I was prescribed Hydroxurea (Hydra) , 500 mg a day, and also had to get a phlebotomy every 3 months to keep my levels where they needed to be.
Things were going as well as could be expected, until I went for a scheduled checkup back in January of ‘23’, and my hematologist told me that my ‘creatinine’ level in my kidneys, which is supposed to be at ‘1’ had risen dramatically, and with follow up readings over the next two days (through urine tests & blood draws) it showed the level was almost doubling every day.
I got ‘fast tracked’ into a teaching hospital in Worcester, MA.
For 10 days I sat, while 2 teams of doctors (and students !!) were trying to diagnose what was happening. They finally determined, through case studies going back to 1945 (!!), that in addition to the PV, that I had suffered from an IgA nephropathy, which is a disease of the kidney & the immune system.
It’s SO rare that they were able to find only 23 (TWENTY-THREE !!!) recorded cases of people having both PV & IgA from 1945-2016.
I ended up staying in the hospital for exactly one month, while they tried, through intravenous, to find a suitable blood thinner that I could take in pill form from home.
My nephrologist put me on a steroid, called Tarpeyo for a few months, and changed up my blood thinners, which I take due to blood clots in my legs & lungs. He took me off of the Tarpeyo after about 8 months because it was cost prohibitive (almost 17K $$ a month !!)
The end result of that hospital stay was that I ended up from having high platelet (or hematocrit ??) levels to being anemic.
YAY, no more phlebotomy’s !!

However, due to my increasingly high white cell count, last month, I had to get a bone marrow transplant.
They suspected that I might either be progressing towards having leukemia, or perhaps even worse, a more aggressive & dangerous form of PV (I can’t think of the name of it off of the top of my head).
Both tests, thankfully came back negative to those two possibilities, but the mystery remains. ‘Something’ is keeping my white cell count high, while now also my red counts are rising too !?!?
I had my first phlebotomy in
2 1/2 years last week.
They have increased my Hydra now to 500mg once a day, and then 1000mg a day every other day. I’m on 11 different meds right now (18 pills a day), and have the same symptoms as do the previous posters on this thread…mainly feeling lethargic most of the time.
I apologize for the long version of my story. I just wanted to put it out there. Thank for reading it.

And, most of all, good luck with your Mom. 🤞🏼🤞🏼😁

@albertedward
I was moved from HU to Jakafi because a bone marrow biopsy showed elevated TET2 and ASXL1 mutations. I had just come done phlebotomy treatment once a week for a month as well. Now my Jakafi (Ruxolitinib) medication has been withdrawn for 3 weeks so my platelet count comes back to normal--went down to 79 in two weeks.
If you are in your first year of diagnosis, remember it takes time to get the numbers to settle down and the medication dosage figured out to maintain the desired numbers. It was not required for me to have a bone marrow biopsy, but I wanted a benchmark of the marrow condition and it was the smartest move I made early on. It doesn't hurt and usually insurance pays for it if the doctor recommends it. Luckily my insurance does cover Ruxolitinib because it is extremely pricey.
Best to you and anyone navigating this little studied disorder/cancer.