Seem to be struggling these days with regulating body temperature. Changed the bed sheets today and it made me sweat. Anyone else experience this?
I wonder if this is a disease related symptom or a side effect of the drugs. I seem to sweat worst around the neck for some reason..
Yeap I was like that when I stated my treatment and was having Intravenous Cyclophosphamide and 60mgsteriods. I noticed more at night but it would happen at any time day or night. Like you with was worse around my neck. At night I would wake up with my head wet with sweat particulary the back of the neck. I could also find my hair damp with sweat at intervals during the day. I assumed it was the WG but I guess it could be the steriods.
My husband who has WG says his thermostat just doesn't work anymore, he can't seem to regulate his temperature.
My thermostat has gone too. Can't cope with either too hot or too cold! My husband complains because I throw the duvet off at least once a night, (he gets the double fold) whether it is a warm night, or a cold one. Luckily I've not yet been so bad that we've had to change the sheets.
I also sweat round my head and neck; this is pretty random and can strike at any time, but is often after a meal. I get really cross when it runs down my back and/or steams up my glasses! Night sweats were one of my earliest symptoms, but I've been assuming that the steroids are joining in too now?
Glad to know I'm not alone!
I am wondering if this is linked to pred. I have drenching flushes still at night; some days it only takes the barest of effort to raise a sweating flush.
I too am having the sweats (or glows, sounds more lady like!!), no actually it is sweats, rund down my face, neck and hair stuck to my head. Oh such a good look!!
I am mid diagnosis at present - I have Rheumatoid Arthritis and had this for 12/13 years, am 52 years old, have fibromyalgia and more recently it was thought that I have Giant Cell Artiritis (GCA), but as it is not resolving they are now considering other issues. Possible Vasculitis - I know very little about this disease - had CT, no tumour which was another thought. But now having to have urine tests as protein showing in my blood which could indicate kidney filtration problems, but having seen the actual test it appears they are testing for BENCE JONES, which might indicate plasma myeloma... Ho hum.. So confusing, so worrying, although the later possibility is not one I am giving too much thought too - far too scary!!!
Just trying to get through each day at present and coping with the reduction of the steroids at 10mg per week. Really rubbish day to day - so tired, so sweaty, such a bad headache and the meds are not keeping it at bay - dihydrocodenie 120mg x2 slow release plus paracetamol 4 hourly, and very little 'proper' sleep due to the sweats etc. Stomache pains.. moan, moan moan - sorry..
P.S. Please could someone explain 'WG'?? thank you
Hazel x
I was suffering with night sweats before I was diagnosed with MPA. These continued during initial treatment and actually got worse. I was affected during the day as well but mostly at night. My head and neck were most affected. I used to wake up and find my pillow was soaked. The sweats gradually got less and less as the treatment went on and having now just finished my treatment I am hardly bothered by them. I think in my case the cause was the vasculitis causing the problem rather than the pred.
The back of my neck and scalp sweat and my temp is erratic I have wg.
WG is wegener's granulomatosis click on to see more.
it's now called GPA granuloma with polyangitis [I think!]
"House" [with Hugh Laurie] was always looking for wegeners.
regards,
sandra.
John suffered terribly with night sweats in the early days, we would have to change the bedclothes at least once in the night.... ... he still occasionally suffers from night sweats around the head and neck even now... but not very often...he has not taken prednisolone for 18 months now...in John's case it is the WG just letting him know it is still around... as far as I knpw prednisolone does not cause sweating... John also feels severe temperature changes from very hot to very cold... if he gets really chilled it takes him a very long time to warm up...which can cause some "difference" of opinions on if we have covers on or off the bed or the bedroom window left slightly open at night 
Susan, my friends have a single duvet each on their king size bed because of their differring temperatures.
regards,
sandra.
Seems like its "just another" vasculitis thing, and common across a number of sub-groups which is interesting.
Anyone know what fever and sweats are part of this illness? And why we struggle to properly termo-regulate. I often wonder if it's some sort of autonomic neuropathy, but my neurologist and rheumatologist don't seem to think so. Perhaps it's more to do with the way our immune systems react when the vasculitis is active...
Hi Wellsie, my thermostat has gone haywire too, its got to the stage that it is really stressing me, as there is no let up. I am currently off the pred and having 6 monthly infusions of rituximab. My dr said its the menopause in my case, but i dont know anyone with symptons like mine. It is really quite severe,i have hot sweats all day, all nite, then im freezing in between, i could actually time them coming on, i have 2 an hour every hour 24 7. I think it must have something to do with the immune system being suppressed.
Thought I could blame mine on "the change" too, but I'm 43 and male. It is very unpleasant when it is like that.
i've just come across this question. I do sweat a lot with the pred but find in comes in "sort of waves" and yes i do find it mainly affects my neck! how odd! I find all night i'm in and out of the duvet - hot and cold - sweating and shivering........last year was the last time i had a good night's sleep! However, i do remind myself when i'm getting myself all angry, annoyed and mad with myself......that its a small price to pay for being here.........well i try.......lol!
Your last sentence is a wise reminder to us all
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