I was wondering if anybody would be able to help me. I was diagnosed with Lupus in August 2022 (f, 22)
Since December of 2021 I’ve experienced regular and persistent fevers with little other symptoms (besides the classic lupus ones - joint paint, tiredness etc) - I was tested for lymphoma and Leukaemia etc, and there’s no sign of virus activity besides my Immunoglobin G being elevated.
Whenever I exert myself or get too tired I get these fevers - they range between 37.5 - 38.2 degrees C. They pass after a few hours and are eased with Ibuprofen.
I am on Hydroxychloroquine and have been for 6 months. My inflammation markers are not elevated, so we don’t think the fevers are caused by inflammation.
Has anyone else experienced this with Lupus? It’s getting to the point where I’m concerned and fed up and nobody seems to be able to give me any answers. I can put up with them if that’s what I have to do, but I also want to feel a bit reassured I’m not dying (lol).
Thank you so much, best wishes
Mac
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Tinylittlemac
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No wonder you’re fed up and worried - you’ve had a rough time of it for so long and understandably would like some answers.
If you haven’t been asked already by Rheumatology, it may be worth you noting down (or saving in on a health app on your phone) whether these fevers happen at roughly the same times each day, (by taking morning, lunchtime, mid afternoon, evening temperatures) to see if there is a pattern to the timing of temperature rises, falls, fevers. Also, noting whether anything else that happens just before or during the fevers, as this will all be good info for Rheumatology.
I’ve SLE and was diagnosed mid 2021, which is not currently controlled. I get low level fevers in between flares, but I can’t say whether this is the norm or not. I’ve been asked to take all this info to my next Rheumatology appointment, as she thinks I’m possibly continuously low level flaring, as well as having the bigger flares. She said with Lupus we all have different flare activity and profiles.
I’m afraid I can’t be much actual help as to what else to do in a practical sense, other than a damp cloth on the forehead or a fine mist water spray. Or Primark sell a blue gel filled clear plastic face mask to go in the fridge, stays cool for a while, reusable. Helps if you don’t want to take tablets if your fever isn’t raging.
I know there are many others here with far more helpful ideas and knowledgeable information 😊
Thank you so much for your reply! I have been taking photos of my thermometer and recording the time of day (almost always afternoon/evening and when I’ve been moving around!)
My Rheumatologist doesn’t seem to have many theories on what could be causing them so consistently so I’m just a bit on edge about it and its long term effect on my body. I’ve not thought of a plastic cooling face mask though so I’ll definitely be giving that a go.
That’s great, if you’re getting that together. I still mine in my Health app too so it plots it on a chart so I can screenshot it and print it off. At least you’ve been checked out for the really bad causes of fevers, and that’s clear, so that’s fab.
There’s an AI disease called Adult Onset Stills Disease that causes daily fevers at set times of the day, every day, it’s very similar to SLE. There’s not a specific blood test for it, though certain markers will be raised. But, there may also be a rash/other symptoms at the time of the fever too. I would have thought thought that they’d have discounted that though already as you’ve a Lupus diagnosis. I’ve linked in case you wanted to look even just to completely rule it out yourself! :
Oh this is so interesting! They didn’t actually tell me about this but they may have ruled it out! I’ll talk to my rheumatologist, but lots of these symptoms really align with me. Thank you!
They probably didn’t as they probably ruled it out before giving you a Lupus diagnosis, based on your blood results and symptom patterns etc. As my Rheumatologist said, it could be the pattern of your flares/symptoms until your Lupus is more controlled - that’s what the temperature and note taking will help figure out.
Hope you and your Rheumatologist can get you stabilised. Take care ✨
A ‘wonky’ hyperactive autoimmune system is known to cause inappropriate release of neurochemicals which can lead to sweating with minimal exercise. It happens to me 😬😬😬
I have EDS, not Lupus. For me, I think histamine intolerance is causing flushing, sweating etc etc. Other neurochemicals could cause it in Lupies.
Hi, I've had Lupus since 1987, and I have constant battles with slightly raised temps, night sweats etc, more of an irritant, or more that I've become accustomed to them. It was worse in the early days when it was all new. These days I keep taking the medication, pace myself and take note of what my body is telling me. Its never easy, and Lupus is nasty at times, but like most things, it could be a lot worse. I'm sorry I can't help more, other than to empathise and wish you well x
Thank you for your empathy! As bad as it sounds it’s sometimes really reassuring to hear that other people are experiencing similar things to you, even if they are not nice things. So thank you! I hope you keep well xx
I've been experiencing night sweats too and I'm glad to see this post ( I'm off course hoping everyone is ok and theres a simple explanation for these symptoms) I've been checked by rheumatologist and nothing nasty thank god. However I was found to have elevated crp 50 but no other elevated results. The doc says its chronic inflammation but no other explanation. I'd love to know why that is especially as I take hydroxy and imuran. I have sle for 15 year s now and this is new in the last 3 years. All information gratefully received.
Do you get a fever with the night sweats? New symptoms are always so frightening. I only get night sweats when I’m hormonal (I think it’s got something to do with the lupus & hormones combined) so perhaps it’s something like that!
I have had Lupus for over 30 years and the last 3 years or so, I get the opposite, i feel like i get internal shivers, so much so I can actually shake with it, I find it quite frightening. My rheumy thought it was Rigors, but wasnt really sure x
Hi Tinylittlemac. Sorry you are experiencing such awful temperature changes. I do not know if you take prednisolone or have prednisolone injection?
I too experience sudden changes in temperatures. One of the confirmed causes by my rheumy was the Prednisolone. He explained when I exert myself our body is very clever and gives us a boost of the steroids which are in our bodies. This then causes a sudden change in temperature and sweating.
I am fortunate enough to have persevered and have weaned off the Prednisolone now. But it is early days as I stopped 31st January. I am continuing to experience sudden temperature changes. For me this could be a) my body adjusting to no steroids and b) hormonal changes due to the menopause.
From your bio you should be too young for the menopause but I thought I'd mention it just in case it is worth a consideration.
I believe you are on Hydroxychlorquine.
I tried this and became allergic extremely quickly so I am unable to say if that could be affecting your temperature.
Sorry I cannot give you any more help - hopefully this has been useful?
We have tough everyday problems and body issues but we are all here for you. Keep on going and there are good days on the horizon.
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