Hi all, over the last week or so I have been suffering from excess sweating! I thought last week it was just the weather but had a meeting at work - in prep for going back to work - and literally thought I was melting!! The sweat was dripping off me. It is just my head, face and back - but I was soaked :-(

I was diagnosed with systemic lupus erythematosus and started on azathioprine 4 weeks ago and thought it might be a side effect but the nurse at the monitoring clinic checked with the consultant and it isn't. I have been on prednisone for over a year and this hasn't happened before. Does anyone else have this?

I have a GP appointment tomorrow to see what he thinks too.

Thanks in advance. :-)

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19 Replies

  • Hi, i get the same as you im in work and my clothes are stuck to me i feeling like im heating up from the inside out, is it the same for you im on planqinel 400mg. I also thought it was the weather but omg i feel like im in a steam room, ive even come out in heat rashes now due to my heat. Have you had any news from you doc about it.

  • Ah glad I am not alone - although it's not ideal for either of us :-(

    I see the GP tomorrow morning so will let you know how it goes.

  • Hiya. This happens to me too. I'm always like a furnace on the inside and I'm known for being a mini radiator. It got so much worse when I was on prednisolone and my work clothes became disgusting. Stopped the pred for other reasons and now on hydroxi. Is much better but I'm still hot in this weather! Such a horrible symptom of lupus! I've been told its due to your body fighting like when you have a temperature with a cold xx

  • Ah, honestly it's such a relief being able to come on here and feel 'normal' - it makes sense that its the body fighting, hoping its a sign that the new meds are starting to work. I can only hope. Thanks for replying. Xx

  • No hun your not alone, im in the same boat. I have been using the coolnspray i sell in work its like magic cool it does help to cool you for about 10 mins then its back to square one. Good luck for tomorrow.

  • Think I may need to get some of that just for temporary relief - not finding a lot that works at the minute. But like all the other lupus symptoms its always a bit of trial and error. Thank you. :-)

  • I have very bad sweats. It drips all the way down my back, down the front,neck and face are constantly hot and sweaty. I had chemotherapy due to lupus over ten years ago and it has given me an early menopause.even when it is cold i sweat cobs! it could be due to my medication as i have had a transplant. can't stand my clothes sticking to me,have to change my clothes when i come back from shopping trips. feel like an oven most of the time and it's not the weather either.

  • me too! last week was the worst ever but as others have said I put it down to the extreme summer heat weve had, but even now its cooler im still sweating very badly. its embarissing to say the least! im on plaquinil (hydroxy) and ibuprofen for my pain. I will watch with interest what things can help me.......even during the night I wake up 3 or more times drenched :( x

  • Sweating was a big problem for me before I was diagnosed, waking in the night needing to shower. Since treatment with plaquenil (I have mild SLE) things are better but I'm still uncomfortable on and off in the day. At times I have to crash and wait for it to pass, the sweats make me feel ill. I have a small cool air fan clipped on to my table where I use my pc and its been invaluable and cheap from Amazon :) Got a floor standing fan as well in my bedroom that was my mothers....

    I've also taken the duvet off my bed and am sleeping for now under the duver cover, thats helped as well. So no you're not alone, far from it. My hospital doc told me from day one sweating is a symptom of SLE.....

  • Ah thanks everyone - it's amazing how many things can be put down to the lupus - it really is a tricky condition.

    Visited the GP today and he confirms its just the lupus - and the only thing they can prescribe is a strong deodorant - which I can't really spray on my head! Luckily I have quite short hair but have been this afternoon and got it cut a bit shorter - as I think the sweaty head is here to stay. Next stop amazon for a fan!!

    Thanks and hope we all manage to stay cool!

    Donna :-)

  • If you want to try the cool spray its made by insette cooling mist, i work in health and beauty and this product is amazing. We sell it in my store for 79p. It stays ice cool in the can and that little burst of ice cold air feels amazing. I dont know what i would have done in this heat without it, i even spray inside the car if its hot lol. Hope this helps keep us a little cooler. Oh the joys of lupus x

  • Ah that's brilliant - will have a look out for it. Anything for a bit of light relief. Thank you :-)x

  • For me these are an indication of a flare, I don't have them all the time.

  • Thank you - think this might be what's happening - have woke up today with the mouth and nose ulcers back. This is def a learning curve!

  • Hi purple top i also think you right a flare in the making, and bang today and yesterday it hit me like ton of bricks and i hurt inside and out.

  • I'm the same, chest pain and difficulty breathing, plus hair falling in handfuls.

  • Yes I get the sweating, for years I was told it was the menopause but I just couldn't believe it could go on for this length of time. At least 15 yrs. it has changed so maybe some of it was but still get them every day. I notice when I M just about to go to sleep I wake up suddenly not feeling well, my heart is beating fast and then the heat and sweats start. Day or night it will happen, going to sleep is def a trigger. How strange. Doctors don't seem to take it serious an in the big scale of things it isn't but it is still very unpleasant and stops you having rest. Good to know I am not n my own. It's 4am in the morning and I have been up since 1.30. Have developed a cough and short of breath one of my problems and the sweats aren't helping. Good night everyone. X

  • My face sweats mostly..my top lip looks like its leaking.,.its horrible and promoted wrinkles on my top lip more I swear...

    I night sweat, but no fever ever..

    I thought maybe post menopause stuff...or lupus..or the med? (hydroxyl/plaquinil)..im hypothyroid as well, but usually that might make u cold...

    I never had hot flushes really with menopause...

  • I was diagnosed with lupus last year also have rheumatoid arthritis. For 17 years thought I was getting a bit better when I came out of hospital but seem to be getting worse now I have these terrible sweats

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