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PV and fatigue

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)
@draney

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)
@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)
@sanjayd

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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