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I'm curious about people's use of various meds for PV, when they've transitioned to a different medication, and what they transitioned to. I'm currently on 1000 mg of Hydroxyurea and phlebotomies, am very iron deficient, and miserable (fatigue, nausea, headaches, itching, and night sweats).
Rest when you need too, no one likes fatigue but we are all human!😜
I was diagnosed with ET in the spring, but apparently I had it for two years before diagnosis. My main symptom is Fatigue. Will that increase the longer I have ET? Or is my level of fatigue more related to my platelet level?
Does anyone have experience with this?
I’m only getting more and more tired
At 73 I’ve been working out for 40 yrs and have a muscular build. Recently, after starting 9 hydrea 500mg per week, I find myself extremely fatigued if I workout hard then take second hyrea that night. Next day is a wipeout.
Experimented with light session and it seems to reduce the fatigue.
Is there any research on the effects of exercise and PV with hydrea? Anyone else in the same boat?
Wow!!! That’s great news from you. Terrific info, we are similar and I have adapted a bit better now with easier workouts. Best wishes Peter
Hello, friends! I am newly diagnosed with PV. Have been trying to keep my blood counts down with aspirin and monthly phlebotomies. My doctor has been talking to me about starting medication. My question for y'all is this - have any of you taken hydroxyurea and then Jakafi? If so, which one did you feel better on? Also, did you feel the medicine was worth the risk and side effects of the medication?
Thanks!
Kelly
I started on 500 mg/day HU in 2022, but dropped my counts too low so stopped. Ii restarted in March with every other day. It seems to have brought my numbers down gradually. I was having phlebotomy… read more
I have ET and often experience fatigue, together with shortness of breath, chest and back discomfort. Does anyone have the same symptoms together with fatigue? I think it is heart-related. Any experience? Thanks!
Dear Glenn,
As Janet6 also pointed out, this is a perfect place for us to vent and to exchange information, as we need to advocate for ourselves in health care and that is a heavy task on us. So it… read more
Hi All,
I am a 62 y/o law student. Over the last nine months or so, ever since my polycythemia diagnosis, I have noticed trouble recognizing, remembering, and naming other law students on my campus. These are people I feel I should know. I wonder whether my blood-sludge is decreasing oxygen transport to my brain. I worry that this problem will get worse and affect my capacity for critical analytical thinking.
Online reading has not indicated polycythemia as a reason for such memory trouble… read more
Thank you, Tatiana. Very helpful information! It's good to know I am not alone here. I will follow your research links.
Fatigue is a staple of MPNs and it is explained away and dismissed, although it can be disabling
https://onlinelibrary.wiley.com/doi/epdf/10.100...
"Prominent symptoms include fatigue (92.7%), early… read more
Has anyone seen any interesting definitions of what causes MPN-related fatigue? I would like to learn more about it, not just hear experts say that it exists without saying anything about why. 😇
Hi, Erik. Fatigue has been my number one symptom. I push myself to stay active meaning keeping my behind off the lounge chair. I try to eat healthy. I take a cannabis nighttime edible candy (it is… read more
