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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beebo | @beebo | Oct 20 11:50pm

In reply to @lisbob40 "My husband has PV, which he’s had since 2018. He used to have to go for..." + (show)

@lisbob40 I was diagnosed with PV In 2021, but probably had it for a lot longer.
I started out having phlebotomy treatments every two weeks and after a few months cut back to getting them on an “As Needed “basis based on my doctor’s assessment of my #’s. Now I have not needed one in almost 2 years. Currently on 500mg hydroxy 4x/week and getting monthly blood tests.
And yes, my white blood cell count is consistently over twice the normal level. Doctor says it is just a factor of the condition’s over production of blood cells.

christinele | @christinele | Oct 21 6:24am

I had the same problem with a phlebotomy last January. I passed out after I had it. After taking 500 mg hydrox my platelets went down but red blood cells increased. I had phlebotomy last week and had no problems. Am thinking the other ones were scheduled to close together. Dr. also increased hydrox to 1000 a day. Am going to have blood work on the 7th and hope that decreases the levels from increasing.

robinll | @robinll | Oct 22 12:24am

I have PV and was getting phlebotomies at least once, sometimes twice a month even though I was also taking hydroxy. but then I found a secret of keeping my counts low....I drink as much liquid as possible before the blood test and the drink that works best is Tonic. Yes, quinine thins your blood. I prefer Fever Tree because it does not contain preservatives. Is this cheating? It was recommended by the phlebotomist.

nypara66 | @nypara66 | Oct 23 7:06am

In reply to @robinll "I have PV and was getting phlebotomies at least once, sometimes twice a month even though..." + (show)

@robinll If her hematocrit is still over 45 she’s only cheating her own health. That’s means her numbers will be even higher at her next labs and she could risk throwing a clot. Be careful.

eferret | @eferret | Oct 23 9:44am

I would consider looking into Besremi as an alternative to hydroxyurea. It is injected every 2 weeks. It does a much better job of controlling the blood counts and lowers various risk factors such as blood clots, myelofibrosis and leukemia related to hydroxyurea. I was on hydroxyurea for several months after being diagnosed with pv with high hematocrit and high white blood count. It kept the hematocrit under control without phlebotomy, but didn't do much for the white blood count. I consulted with an MPN specialist who agreed that Besremi was a better fit for me, so I have been taking it since February and it is working fine to keep everything under control. As with any other drug there can be side effects. I would recommend for anyone with an MPN to consult an MPN specialist, since they have broader knowledge and experience in that area than a regular hematologist.

christina3444 | @christina3444 | Oct 23 11:17am

In reply to @robinll "I have PV and was getting phlebotomies at least once, sometimes twice a month even though..." + (show)

@robinll Have you shared this “trick” with your hematologist and, if so, what do they think about it?

beebo | @beebo | Oct 23 10:12pm

When first diagnosed in 2021 I started getting them every two weeks. This lasted about 3 months and then started to become only on a “As Needed “ basis. This was determined by my doctor who had me doing monthly blood tests. He’s now managing it with Hydroxy dosage and I have not needed a phlebotomy in over two years now.

robinll | @robinll | Oct 23 11:34pm

In reply to @nypara66 "@robinll If her hematocrit is still over 45 she’s only cheating her own health. That’s means..." + (show)

@nypara66 My hematologist is a young and very engaged man who I have great respect for but no, I haven't shared this cheating trick with him. He is not concerned with my MCH levels which have been running at 45.1 - 45.5. What he/we are greatly concerned with is the PLT count which was in the low 600 range a year ago until I started taking Jakafi then it shot up into the 1,050 range. Now we've got it down into the 700 range having gone back to Hydroxyurea. I've researched Besremi but don't like what I've read about the possible side effects. BTW, I'm 77 and considering I have PV, I'm actually doing quite well.

nypara66 | @nypara66 | Oct 24 6:40am

In reply to @robinll "@nypara66 My hematologist is a young and very engaged man who I have great respect for..." + (show)

@robinll So happy you are doing well! I’m 59 with PV also. Glad to hear your platelets are down. Hydroxyurea seems to be the less of the two evil drugs, three is you count Besremi. I wish you continued progress 😊

Colleen Young, Connect Director | @colleenyoung | Oct 29 8:04pm

In reply to @eddiefrombrighton "I’d like to share my story, tho this may be a bit lengthy; I hope you..." + (show)

@eddiefrombrighton

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. 🤞🏼🤞🏼😁

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@eddiefrombrighton, that is quite the story. No need to apologize for the length. That's a lot to cover in few words. If you wish, you might also join the discussions in the BMT group:
- Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Bone Marrow Transplant (BMT) & CAR-T Cell Therapy

And there's also a Kidney Conditions group https://connect.mayoclinic.org/group/kidney-conditions/

While we all want to think of ourselves as unique, I bet this is a time you didn't want to be such a rarity. How do you manage your fatigue?

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