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Polycythemia Vera (PV) and fatigue: What helps?

Posted by yitz @yitz, May 30, 2023

I am 67 and have had a PV diagnosis for about a year. Treating with hydroxyurea and occasional phlebotomy. I have been relatively active all of my life and pretty healthy and in decent shape - balancing my Hemocrit and ferritin levels which can be challenging.- checking counts every 3 months. I have been frustrated with less energy and more fatigue lately - hemocrit is just over 45 and ferritin around 30.
Has anyone b enough able to successfully balance maintaining normal energy levels?

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jerrlin | @jerrlin | Jul 14, 2023
In reply to @draney "I have had PV for over 12 years it just about killed me at the beginning,..." + (show)
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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

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I’m so happy for you. I’m 4 years in, 74 hrs old and seem to keep steady with a phlebotomy every 4-6 months and 2 aspirin a day. I notice a change in my breathing but seems to come and go. Yesterday I golfed 18 holes and walked. Had to rest sometimes but not bad. My real problem is the itching. Keep a positive attitude as we all have different challenges. I can’t let the “ Old woman In”

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draney | @draney | Jul 14, 2023
In reply to @jerrlin "I’m so happy for you. I’m 4 years in, 74 hrs old and seem to keep..." + (show)
Profile picture for jerrlin @jerrlin

I’m so happy for you. I’m 4 years in, 74 hrs old and seem to keep steady with a phlebotomy every 4-6 months and 2 aspirin a day. I notice a change in my breathing but seems to come and go. Yesterday I golfed 18 holes and walked. Had to rest sometimes but not bad. My real problem is the itching. Keep a positive attitude as we all have different challenges. I can’t let the “ Old woman In”

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If you are still itching quite a bit it's because your blood is still too high it needs to come down. And congratulations I'm glad you're still feeling better 18 hole

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chella65 | @chella65 | Jul 14, 2023
In reply to @sanjayd "Hi All — I’m new here. I was diagnosed with PV in Nov ‘22 (I was..." + (show)
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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!

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I wish I had good advise about the itchy. My itch is after I shower, my scalp and skin. I put on Gold bond on my skin works well so far. I try not to take but luke warm showers and that does help.

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carolgeo | @carolgeo | 1 day ago

I was diagnosed with polycythemia 6 years ago just found myelofibrosis stage 1-2 a few months ago bone marrow biopsy Years of Hydrourea I do have fatigue and itching . phlebotomy about twice a year Labs every three weeks Dealing with iron low but high hemoglobin I am retired 84, and I live alone..Talk therapy and staying busy helps me Good family support My protein is low

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christina3444 | @christina3444 | 6 hours ago

Hello, Im retired, 78 years old. I was diagnosed with PV/JAK2 about 6 years ago. I take one baby’s aspirin daily and 1000 mg of HD. And, the fatigue may be the worst I can complain about.
At first I was schedule for phlebotomy if my hematocrit was 45 or more. It became obvious to me based on pain in my legs and fatigue that once my hematocrit level was 42 I needed a phlebotomy and my hematologist agreed. Curiously, I had a nurse in the Infusion Unit argue with me that the level wasnt high enough to warrant a phlebotomy! I told her to contact my doctor. I don’t what the doctor said or noted, but that’s never happened again.
I am my best advocate and I know how I feel.
I urge you to talk to your hematologist about getting a phlebotomy when your hematocrit reaches 43.

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