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PV and fatigue
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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I take one baby aspirin a day. Low dose 80mg. They did take blood out of me for 3 weeks, more than a pint. Then told me I am losing blood and it wasn't what they took. Honestly I do not think that helped me anyways. So I started taking the aspirin, took a few weeks but now I feel great. I still overheat some times, and I sweat. But it has been less and less. Oh and today is Day #120 since I had my last cigarette.
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7 ReactionsI’ve had the same reaction to PV - am on Jakafi 20 mg 2x/day. It gets a bit better : good days, bad days. Was told it’s a side effect of PV…. Take it easy on the less good days. All the best!
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4 ReactionsI was diagnosed 3 years ago with PV and positive for Jak 2. I take 2 baby aspirin a day and a phlebotomy about every 3 months. The fatigue has been coming more often and the itching is a real problem at times. Just wondering if anyone also has shortness of breath? I have no other health problems and take no other medication. I’m very active but find this sometimes getting in my way.
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1 ReactionFatigue is a major complaint. I nap almost every day. Taking 1000mg of hydroxyurea and baby aspirin daily.
Gout attacks every 4 weeks for the past year. No alcohol or smoking. I am 79 and active. Itching actually improved and is very minor now. Two years post diagnosis and labs have been good. jjd
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2 ReactionsI am on hydroxyurea 1000 a day and blood thinners. I have had pv for about a year and still trying to balance the meds.I have good days and bad also.If I do a very small job seems like I run out of Gas and the tank is empty.I tend to do just one small job a day.I also run out of breath so will be getting more tests.It may be the hydroxyurea or PV.but Plan my days as I feel.Just keep on living all of you with the same problems.and let's enjoy the good things we have.
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2 ReactionsI was diagnosed 3 years ago with secondary (non cancerous) PV. I do not have the JAK2 mutation. My blood counts have been all over the map which concerns me. I have had phlebotomy on a three month schedule for the time period. I am always exhausted, short of breath and weak. Really frustrating from someone who used to walk 6 miles a day without complaint.
I am concerned with how this is going to progress. My mom had Myelofibrosis and her mom died of acute myelogenous leukemia. Mom's doctor suggested that it would possibly run in families, but my doctor disagrees.
My question is can I still develop JAK2 mutation? Trying to figure out where to go from here.
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3 ReactionsI am a year older than you.. I was diagnosed with PV in April 2021… I am on baby aspirin and hydroxyurea … Monday, Weds, and Friday 1500mg.. the other 4 days 1000mg.. my hematocrit level has been the major focus of my oncologist … I have been under 40 for the last year… I am active and bike just about every day the weather is reasonable… My energy level is the best it’s been in years… I am at a very good weight and I rarely feel any fatigue at all… I don’t know how long it will last, but I’ll take it for now… The one symptom I do feel occasionally is pain in my big toe on my left foot.. Go figure…
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4 ReactionsHas anyone found help for the itching?
That’s good. !!
Like me, your big toe pain sounds like gout. jjd