Hydroxy Urea and Heat Exhaustion
Has any with ET, Jak2 found that Hydroxy Urea exacerbates a tendency to experience heat exhaustion when hiking in warm, humid conditions??
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In my opinion, it's our heavy load of oversized, misshapen platelets that impedes blood circulation.
ET itself makes heat exhaustion a serious hazard.
It's no longer safe to exert ourselves as we used to do.
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3 Reactions@janemc I am in Dublin and we are having very hot weather which I find exhausting. The only advice I can give is to drink lots of water. Getting good sleep is the hardest thing but hopefully we can hang in there until the weather changes.
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5 ReactionsI live in AZ. Very little humidity usually but extreme heat from now until October. It’s 96 now at 9:30 am and it’s going to 106!
I am absolutely certain that the heat affects my level of exhaustion and a general malaise I feel more during hot weather than cooler weather. And, humidity just makes it worse.
I do take care to stay hydrated and spend as little time out of doors as possible and when I need to I take a nap (something I rarely did before I was diagnosed with PV/JAK2).
My mother used to tell me when I was much younger and she was in her sixties and would complain I was tired that I had no idea what tired was.
I’m 78 now and she was oh so right and the PV doesnt help.
I force myself to do things I know will tire me out because I’m not going to let PV completely control my life but I do realize limitations and the signals my body gives me that tell me to stop and rest and take that nap when I must.
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2 ReactionsMy wife (Becky) was diagnosed with ET/Jak2 2 years ago. At 74, she's been athletic for the last 40 years doing many triathlons and marathons over the years. Here in Massachusetts, we just went through temps in the high 90's and low 100's with heat indexes in the 100 teens. The heat/humidity has had no more effect on her than it used to. To be sure, it's has always been a problem but no worse now than 20 years ago before ET. She has slowed down over the years but from age and not the heat. I would say, and she agrees, that the heat/humidity has not had any more impact on her since the diagnosis. Perhaps she is different or perhaps it's her very active lifestyle over the years that has helped.
Michigan here. We're used to summer humidity, but heat over 85 has always brought me down and affects my mood. Last week was in 90s, under the heat dome like everybody else in the Midwest. Very miserable and draining. Fortunate enough to exchange window AC with central air when I retired. It doesn't run more than a couple weeks per year because house has a lot of shade, but it saves a lot of misery when it does. Hugs to fellow heat sufferers.
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1 Reaction@janemc Yep, something like that. In 2017, my third year on Hydroxyurea, I found that, when I'd be out in the sun doing my photography, I'd begin to feel very lethargic and then, when I'd get home and look in the mirror, my face would be red. Since then, I've adopted the practice, in summer, of doing my photography in the morning, when it's relatively cooler, which does help.
@christina3444 I only visited Phoenix once, in 1978, and went out to get a bite to eat around midnight. I saw a bank clock that said it was 104 at midnight....in September. I'm from Oklahoma, originally, where I've seen temps as high as 115 in Oklahoma City, but not in the middle of the night!
@garyr443 HU makes you sensitive to sun, be sure to use a strong sunblock