Night sweats!!!

[GraceXNichole]

Hello guys,

I’m very new to the site and also newly diagnosed with SLE and type 3 nephritis (December 2019). This site has been is what is keeping my sanity together reading people story,advice and questions has really helped me feel like I’m not alone and understand my condition.

But Since September I’ve been waking up completely soaked from night sweats. I usually sleep with a fan on and my room is usually cool or cold but I still wake up completely drenched on average twice a night.

Is this normal for lupus ?

Whenever I tell my GP or renal consultant they don’t act on it or seem worried by it the way I am.

[Hidden]

Hi GraceXNichole, I sympathise with you regarding night sweats. As I said previously when my lupus struck again that was another problem that I had to deal with. Constantly waking up to finding the bed covers soaking and jammies too. At times i thought I'd peed myself and was generally worried about that. Never once spoke to my GP about it as I never speak to my GP about it as they aren't specialists in that department and I find I'm wasting my time. Again, my consultant who I entrust with my life says the night sweats are all kidney related. I don't get them now hit that's because I'm now on dialysis unfortunately. My consultant from the very start were nephrologists but as I'm now on dialysis I actually see the renal consultant today for the first time. Good luck and if you need to know anymore just ask.

[GraceXNichole in reply to Hidden]

Hello,

Thanks for the reply it’s so helpful to know that other people experiences theses symptoms. It really helps with my anxiety. Also I’m sorry your on dialysis now my mums been doing it since 2007 so I kind of understand how hard that must of been for you.

Also good luck with your renal appointment I hope the consultants are as great as your nephrologist consultant.

[Hidden in reply to GraceXNichole]

Hiya, I'm glad that it's helped you a little. All good with renal consultant, everything seems to be going in the right direction and will see him again in a couple of months. Hope you get an answer regarding the sweats and toilet issues. Like I said before you need any advice just ask.

[GraceXNichole in reply to Hidden]

I’m so glad everything went well with you, and definitely if I have any more questions I’ll let you know. Thank you

[Lily77]

Hi GraceXN, you are not alone, night sweats are a symptom of lupus flares. I always have a spare set of nightclothes ready to change into during the night and a towel to put down over the sheets if really bad. Yours sound very heavy at the moment and in need of extra time for new medication to work or some additional meds to get the flare better controlled. Do you have a rheumatologist or rheumy nurse that you can contact because two times per night is very disruptive for you? With my best regards, Lily

[GraceXNichole in reply to Lily77]

Hello,

thanks for your reply,

I’m currently taking Hydroxychlorquine and some other medication for lupus and to be fair I have only just stated it this month so probably need to give it time to work it’s just so frustrating at night sometimes.

I do have a rheumatologist but I only see them once a month i next see them on the 27th but I see my nephrologist consultant every Thursday without fail for blood and urine test. But whenever I tell them they don’t react to it should I be telling my Rheumatologist instead then?

I’m under kings college hospital so I just assumed that the two departments would communicate.

[Lily77 in reply to GraceXNichole]

Mmm...I would not assume that the two departments do communicate and as other members have said it is a lupus symptom...in which case it is much more under the rheumatologist's remit. I agree with other members also that hydroxychloroquine might help but again this is something your rheumy should confirm for you.I would say that given how much trouble the night sweats are causing you...loss of sleep is important when fighting lupus...then you should be able to contact your rheumy team with a query before your next monthly appointment. I wish you the very best of luck getting this sorted out soon. With my best regards, Lily

[GraceXNichole in reply to Lily77]

Thank you so much for your help, I will definitely get in contact with my rheumatologist today while I’m at the hospital and see what they say.

[chrisj]

Hi - I would say a big yes its part of Lupus. Big problem for me in the early days going back to 2005 when I was diagnosed with mild SLE.

I would wake up wet through in the night and needing to shower and change my nightwear. Things are much better these days, I was prescribed hydroxychloroquine and it suited me very well, I'm much better.....I hope things pick up for you xxx

[GraceXNichole in reply to chrisj]

Hello, thanks for the reply.

I’m on that medication too , how long before you started to see improvement I’ve been taking it for a month now.

[chrisj in reply to GraceXNichole]

I can't remember Grace, it seems such a long time ago (15 years since diagnosis) but its worth staying the course with hydroxy if it suits you.

It took a while... a month isn't that long. I wish I could be more exact. The rheumatologist told me I'd been stable for "quite some time" when I saw her in december, hopefully things will stay that way. My big problem these days is osteoarthritis.

So keep on with it. These symptoms of lupus come and go, hopefully you'll feel the benefit soon, wishing you well xxx