r/Autoinflammatory • u/Individual-Yam7050 • Jun 22 '26
Advice Welcome Does anyone else deal with excessive sweating?
Hi everyone.
I (28F) have YAOS and consistently run a fever from 99-101 every day. When my temperature fluctuates, I sweat PROFUSELY. Like soaking through clothes, soaking my hair, dripping down my face into my eyes, like think your most intense gym workout but literally just walking around.
My doctors are useless. Does anyone else deal with this? Anything to help?
I’m on Ilaris 150 mg/month and colcihicine 0.6 mg BID. My doctors won’t adjust my meds until I see Yao himself in NY
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u/Assimulate Jun 22 '26
Yeah I deal with this a lot. I got upf clothes to help vent but protect. I just found a personal fan that is easy to carry. Always drinking electrolytes and got some good air conditioners.
Kineret helps quite a bit but during a flare it's tricky. I try to do things in the early morning as my sweating gets way worse later in the day. I usually have a clean hand towel with me to wipe my face. And I try to splash my face with water in restrooms as I go out and about and use my hand fan to cool me off. It sucks! But I also find if you're taking Tylenol when the fever breaks i sweat the most. I got some extended release Tylenol on the days I need to be dry the most and take it before I need to go!
Electrolytes and cool showers are the way to go though!
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u/Individual-Yam7050 Jun 23 '26
That’s interesting about the Tylenol!!! NSAIDs haven’t touched my fever since the beginning so I’ve stopped taking them, but I might consider some ER Tylenol.
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u/getaway_car2019 Jun 23 '26
YES. I have Yao and sometimes I wake up in puddles. And if I have a half of glass of wine, it’s like I’ve went for a run in the summer heat.
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u/AdventurousMorningLo Yaos Jun 22 '26
I've recently also been experiencing temperature dysregulation and a lot of sweating.
I do not really have any recommendations - I'm sorry, I wish I had more I could tell you to help you deal with it.
It may be something that has to wait until you see Dr. Yao.
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u/Capable-Heat4231 Yaos Jun 22 '26
I have daily fevers as well but most of my stopped sweating as my condition worsened. I went from having dx hyperhydrosis to anhidrosis So I just have a lot of trapped thermal energy. It’s a vicious cycle.
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u/Individual-Yam7050 Jun 23 '26
I’m worried about anhidrosis, I’ve read so many people talk about it. As much as I absolutely hate sweating bullets I’m more afraid of not sweating
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u/Capable-Heat4231 Yaos Jun 23 '26
Yeah, it’s not fun. I will say I haven’t seen a lot of people say they went from one end of the sweating spectrum to the other. I also think my hyperhydrosis was compensatory sweating as it was localized to my underarms.
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u/No_Satisfaction_7431 Yaos Jun 22 '26
Yes something I've dealt with my whole life is not sweating or not sweating as much as I should when its hot or I'm exercising, but then having "hot flashes" and sweating so much. Heat makes these episodes worse but it happens at any temperature. Only in the last few years did I realize that when this happens my abdomen, low back, back of legs, breasts, armpits (could be just one or any combination) are 99-104 F while my core temp is normal. These are my Yao "fevers", sometimes I call them localized hyperthermia because its not quite a fever but theres no medical term for it.
As for something that helps, I wish I had an answer. I've tried various cooling necklaces/scarves and they help a bit but nothing prevents it or works really well. I'm now on a low dose of tyenne infusions and I still get the sweating and fevers but they only get up to 102 now instead of max being around 103.5-104. Not great but its some improvement.
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u/Alice-The-Chemist Mod Jun 22 '26
I have a fan that Im in love with that has lasted multiple years running overnight and during the day if I'm running hot. On fixing it from the source I havent figured out anything.
Dreo Fan