Anyone else suffer with night sweats? - Vasculitis UK

Vasculitis UK

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Anyone else suffer with night sweats?

shella profile image
19 Replies
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shella profile image
shella
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19 Replies
LynneJ profile image
LynneJVasculitis UKVolunteer

I do. But I find it depends on how late I eat and what I eat. e.g. if I have pasta too late .

I think my digestion doesn't work properly.....running slow or something.

I am on Azathioprine.....

Take care

Lynne

Mooka profile image
Mooka

Hi Shella, One of the symptoms when I was first ill was severe night sweats. I still blow a bit hot and cold but they are not nearly as bad as they were at first. I hope you come through this soon as it's very tiring.

Take care Jackie

Yes I did for 3 months before I was diagnosed and then for a further 3 months following.

Essex-jill profile image
Essex-jill

I too had night sweats about six months before diagnosis.

HiveMind profile image
HiveMind

I have night sweats too. I saw my GP this evening about my day / night sweats and she has confirmed to me that the steroids I'm taking are exacerbating them. They are pretty horrendous, especially at night and the only hope I have of relief is the passage of time (and the reduction of the Pred). Sigh....

BronteM profile image
BronteM

Not sure which are the worst...the night ones wake me up, and then I can't get back to sleep. The day ones leave me completely steamed up and feeling rather cross and strange. They are also very embarrassing if I'm with other people.... I agree with Lynne, as I do think they are worse after I've been eating something heavier than usual. Or I've had a glass of wine. Also hoping that they'll improve as the pred goes down. Am on 7 mg and getting there slowly.

johnyenglish profile image
johnyenglish

I suffered with night sweats at least a couple of years prior to being diagnosed. After three years in remission I tried coming off methotrexate and after two months the night sweats started again so I went back onto it and they stopped after about 6 weeks.

Robb profile image
Robb in reply tojohnyenglish

Hi John-are you the member with a personal profile in the latest Vasculitis magazine?

johnyenglish profile image
johnyenglish in reply toRobb

Hi Rob, I haven't seen the magazine but it could be me, if there's a pic of a bloke on a white T shirt with a Canon camera then it is :-)

Robb profile image
Robb in reply tojohnyenglish

You are the man! Your journey to getting diagnosed with WG is very similar to my wife`s eperience early 2011- She was initially diagnosed and treated for RA before landing in hospital with acute kidney problems and weeks of unsuccessful tests before contracting a DVD in her right leg and then a Subarachnoid haemmorage - she has made a remarkable recovery with current maintenance drugs of 5 Pred and 1000 MFM- Her consultant is keen to keep her at these levels for at least a further 2 years -We are just interested in the decisions that led to you stopping your steroid-and how did it affect you initially?

johnyenglish profile image
johnyenglish in reply toRobb

Hi Rob, I tapered down to 10 mg/day and stayed on that dose until my urine tests were clear (no protein) then dropped a mg/month. After 10 months no more pred. Haven't had any further issues since coming off the pred but I always have high C ANCA (1:640) and proteinase level 3 (177) results. Can't complain as I feel good :-)

Haggiss profile image
Haggiss

I've got WG and I'm on am on Azathioprine, been diagonsoed since 2008. The docs say its pretty much under control however, I still do have bouts of night sweats and I mean sweats. Somedays i'm soaking wet when I get up, then other days i'm ok.

DBH1969 profile image
DBH1969

I have WG on prednisone 60mg daily plus cyclo I suffered sweats terribly..... at night is worse I cant sleep, hopefully when reduce my dosages sweats could become less. Constantly changing my clothes..what I find it helps me to walk an hour to let all the sweat out :)

JacquiM profile image
JacquiMVolunteer

I suffered with them just before diagnosis in 2011 and for a short while after. Now on 4mg Pred but still have the odd day nasty sweat :-)

notsossweets profile image
notsossweets

Always since 2005! I sleep with a ceiling fan and floor fan blowing on me at night and still sweat like I'm in a steam room.

optimist-ok profile image
optimist-ok

Yes, night sweats still present, now on 10mg pred & 15mg Methotrexate; day hot flushes, too! Certainly not so bad as before diagnosis of PMR & GCA or when on a higher dose of steroids. Things do improve!

Skipper profile image
Skipper

I suffered terribly but bought some Cool Max bedding from M&S a few years ago which really made a difference. Unfortunately they have stopped selling them but I believe you can get them on linefrom other stores. The sheets etc. feel cool all the time. Not cheap but I found it well worth it.

Wellsie profile image
Wellsie

I get them every night without fail since my PAN appeared; I always wake up with wet hair and a soaked pillow, even if I sleep with the window open in the middle of winter. This is worse when my dosage of pred is increased or I am on cycle of methyl pred.

shella profile image
shella

Thanks to all fellow sufferers who replied.... just got to hope things improve.....may save on heating bills this coming winter.... sorry just trying to keep sense of humour during difficult times! Good wishes to all....

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