PV and fatigue

The biggest notice I have found with me having PV is having a very hard time breathing and not sure what really can be done about it I don't know if getting fresh blood in my body would help or not anybody have any ideas?

My general approach to medication is let's try the natural approach first and if that doesn't work then maybe meds but it depends on how the doc feels if I have time or damage. This will be similar and I will ask if we can try to just do the bloodletting and see if we can get it down that way first before meds but it will depend on her opinion if I have that time to do it. It's a personal preference but I just try to minimize meds as much as possible even OTC things.

I am on a phlebotomy every 3-6 months and 2 baby aspirin a day. Each and every body is different. I chose at this point not to do chemo meds, but if the time comes when I need it, I will absolutely revisit my options. I was told by 2 oncologists that the meds only help symptoms but do nothing to slow the disease. If anyone knows anything different, please comment as I am always open to new info on this disease.

Hi All — I’m new here. I was diagnosed with PV in Nov ‘22 (I was diagnosed at age 52). I take 2 baby aspirins (morning and night) each day, and have been in an interferon called Besremi, which I take as a shot every two weeks. Generally is doing an ok job controlling my blood counts so far, with me needing a phlebotomy perhaps every few months (just started taking the shot in April, so it’s early). @jerlin I also take two Atarax (hydroxyzine …25 mg in morning and night) for itching. It is mildly helpful. The hour or so after skin contact with water/shower is still maddeningly itchy. Has any one out there come up with a different strategy that eliminates the itch? Or, is this just something to expect for life? Thanks in advance for any input!

Just wondering if anyone has checked into stem cell therapy/transplant to treat PV??

Welcome to Connect, @sanjayd. You’re right, that itching from PV is maddening!! I don’t have PV but had elevated hemaglobin/hematocrit for a period of time as a side effect going through medical treatment. I loathed taking a shower! I think my husband thought I was losing my mind because he expected to see welts or something denoting the itchiness. Nope! But the itchiness was almost unbearable at times.

We have quite a few members with PV and I found this conversation for you with @eileen11108 @jerrlin @splashgirl1961 @morfar @shaha75 @sandy1959 @frances007 and so many others who may be able to enlighten you on what has worked for them.
The link is posted below.
https://connect.mayoclinic.org/discussion/pv-itching-not-after-bathing/
Do you feel any difference in the itching after a phlebotomy?

Hi @sap21981, from my research and understanding, a stem cell transplant for PV is rarely used. The condition is generally felt to be managed well with phlebotomies, low dose aspirin, and other medications.

In a small percentage of cases, PV may progress to a more serious blood cancer such as myelofibrosis (MF), myelodysplastic syndrome(MDS), or acute myeloid leukemia AML. Then treatment warrants the undertaking of an Allogenic stem cell transplant with cells from a donor. I can tell you from experience it’s generally a procedure done as a last option of treatment. It can come with risks and side effects but for those who have no other option it can give them a second chance at life.

Some good reading for you:
From Merckmanuals: https://www.merckmanuals.com/professional/hematology-and-oncology/myeloproliferative-disorders/polycythemia-vera

From the leukemia/lymphoma society
https://www.lls.org/sites/default/files/file_assets/FS13_PolycythemiaVera_FactSheet_final5.1.15.pdf
This is a pretty decent article on WebMD explaining the progression of PV.
https://www.webmd.com/cancer/lymphoma/polycythemia-vera-changes-other-cancer
I know you’re relatively new to this diagnosis and I think you’ve started having phlebotomies to reduce your hemoglobin level. This action, along with a medication, may keep you in a good level for a long time without having to consider having a stem cell transplant.
What has your hematologist suggested for you?

Thanks for response…my doctor suggested just what you stated…phlebotomies to start and meds if necessary. Just want to make sure I’m doing everything possible to slow down any progression of the disorder.

I have had PV for over 12 years it just about killed me at the beginning, but very blessed to say that I'm doing well 12 years later my blood count is perfect. I take jakafi to keep my blood count under control, and I take eliquis as a blood thinner. The only problem I have is difficult time getting air I'm not sure what's going on with that but it's been a rough go LOL

I understand that itching too well, when I first got diagnosed with PV I went through itching for a while God I hated taking a shower lol. Hydroxyzine did not work for me because my blood would not slow down from making more blood clips I was put on Jackifi immediately after hydroxyzine would not show any improvement
Once I switch to Jakafi the itching went down to a bare minimum. And was I ever happy. The aspirins did not work for me but being in the hospital for 5 days intensive care because I had a blockage my heart and lungs since then my heart doctor put me on eliquis as a blood thinner so everything has been working out well. I have had this blood disorder for 12 years.