Over the past two weeks have been having episodes of night time fevers. It feels like flu, comes on all of a sudden during the night, wears off during the morning if I rest but it has been recurring every 3-4 nights. Have had 5 of these episodes so far. I got my routine 3 monthly bloods done shortly after the first episode. ESR was 74 and when checked a week later it was 80. CRP was normal as was everything else. Have tried to contact my rheumatologist and have been given a telephone appointment on 11th September which seems a long way away when I am feeling unwell. I have had SLE for 26 years and Sjogrën’s for the past few years but have never had anything quite like this before. Can anyone relate to this? Have you any suggestions as to what might be causing this or how to calm things down? I’m on 125 mg Azathioprine daily and a tiny dose of Hydroxychloroquine ( 200mg twice a week). Any advice would be appreciated. Thanks,
Gemim
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gemim
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This happens when I flare. I wake early hours feeling feverish. Sometimes joints aching, flesh burn feeling, mouth and throat dry and harder to breath.
I take 200 / 400 mg hydroxychloroquine alternate days. In January started to also take 50mg second antimalarial mepacrine three times a week. The two can work well synergistically.
Then unfortunately had to stop mepacrine because capsulated form caused stomach issues and after a few weeks was getting the night fevers.
Now been back on mepacrine (but tablets rather than capsules) alongside hydroxychloroquine and not getting the night fevers. Also no headaches and photosensitivity reduced. It has been incredible. Mepacrine has really helped. It only took about three weeks for things to improve again.
Previous to increasng antimalarial short courses steroid stopped the night fevers that were one aspect of broader flares. So it is getting meds right, particularly antimalarial. 200 mg Hydroxychloroquine was too low for me.
I think natural steroids might fall in early hours and immune system is stronger then so it is the most likely time for equilibrium to swing to get more symptoms. Joint pain definitely worse too at this time.
Before being diagnosed, sleep was affected as felt so bad was always getting up in the middle of the night as felt so bad,and tried to break my symptoms.
Thanks so much for sharing your experiences. I do take one Mepacrine tablet per week from March to August for photosensitivity. Sounds like more might help my nighttime episodes given your experience. I don’t tolerate higher doses of hydroxychloroquine and when I have tried higher doses of Mepacrine in the past have had to stop because of headache. Reassuring to know that others have had similar experiences and it may be just a case of tweaking the medication.
I get this on a regular basis and it seems to come in when I do to much. I thought it was Covid or long covid. I didn’t know that this was part of lupus. My hydroxychloroquine has finally stopped the rashes but my joint pain, fevers, sickness, headaches and sweats all come on when I do to much.
I believe my UCTD was progressed by covid infection.
Pre covid was starting to get night fevers, and other symptoms like POTS and aching joints, then post covid was a different magnitude, with other groups of symptoms added in the mix.
This is an interesting paper on the implication of covid infection for rheumatological conditions. Literature review- with time impact might be more fully established.
Hi. Sorry to hear about your symptoms. I don’t know how old you are but could you be starting the menopause? It might be worth seeing your GP to have hormone levels checked?
Never heard of only taking hydroxychloroquine twice a week. I imagine it's not going to do anything to help inflammation until you're on it every day. Most of us see improvement in symptoms after six months of daily taking it. I had to come off my 200mg a day recently for a couple of months and boy I noticed the difference. So much more fatigued and joint pains.
Thanks for your reply to my post. Yes, I realise that this dose is tiny and probably very unusual but it is all I can tolerate and it has helped my eye/mouth dryness type symptoms. If I take more, I get a thumping headache, so not really an option. Appreciate your comments. Trust you can find ways of coping without your normal dose of it. It is all such a balancing act!
I see. Are you taking pilocarpine for dryness? Not the easiest drug to take as it causes bowel problems and hot flush after taking but great for producing moisture.
No, I have never tried pilocarpine. I did ask my rheumatologist about it when the dryness was really bothering me but he didn’t want to prescribe it because of all the side effects. I tend to be very sensitive to medication and given my reactions to other drugs, he didn’t even want to go down that route. Thankfully the dryness is more tolerable now.
That's good. I can only tolerate one of the four a day I'm supposed to have but the moisture it gives with just one tablet is great. xylimelts and eye drops and eye mask are my constant companion too. 🙂
My eye drops, mask and nighttime saliva replacement spray are my close companions too. I found xylimelts helped the dry mouth but caused stomach issues so had to stop them. Cauterisation of my tear ducts has really helped my dry eyes. I still need the artificial tears but can go longer without them if need be. Thanks again for sharing and advice.
Hi Gemim, I too have night time fevers and feel groggy until about midday. Similar regime of medication and diagnosed around 35 years ago. This used to happen when I was still working as well and I felt like I had a hangover on so many days but hadn't touched a drop of alcohol.
I've always just pushed through as I didn't have time for GP appointment and docs not interested unless tests show something. However, that is what happened early in 2022 when I had severe fevers and chills and still ignored them.
Routine blood tests coincidentally then showed serious results and I had an emergency entry to hospital for Acute Kidney Injury. Spent 10 days on a ward and treated with large methyl Prednisolone infusions.
I think you need to be aware and question, as you are, what's going on, just in case. Hope you feel better soon x
Thanks so much for sharing your experience. Can’t imagine how you managed to go to work through it all. I really want to avoid a major flare up with the need for hospital admission and IV steroids if at all possible. My instinct tells me there is something not right and will keep probing for answers. Trust you are doing OK now.
yes, I have had this. Along with Sjogrens & Lupus, I have had a full neurology work up. I have vasculitis in my brain beside at least half a dozen other neurological issues. What I found is there is a particular type of vasculitis caused by Lupus. For people who have a normal temperature of less tan 98.6, I run 97.7, when the blood in these vessels are too cold, they become gel like and leak. This causes the fevers. To overcome this I use an infrared sauna as much as possible. This keeps the fevers away.
Thanks for sharing your experiences. My normal body temperature is low ( 36.5 C) so very interesting. After one of the MRA Covid vaccines I started to develop neurological issues - tingling and numbness on side of face and legs. I had all sorts of neurological tests which were negative, so the conclusion was that this was small fibre neuropathy. Over time it has disappeared. How do you go about getting an infrared sauna? I really don’t tolerate heat well these days, so the thought of sweating in a sauna doesn’t really appeal but glad that it works for you!
I am sorry to hear how poorly you are feeling. I used to take Azathioprine for my sle years ago, but it caused problems, such as low white blood count and liver problems. I also took Hydroxychloroquine, but not at the same time. I haven't any of your symptoms, it's possibly down to the combination, but the only person who can really advise you is your consultant.Hydroxychloroquine caused me to get Toxic retinitis, I was on 200mg most of the time.
Thanks for your kind words and taking the time to reply. Trust that I will get to speak to my rheumatologist sooner rather than later maybe through a cancellation appointment.
This is really what this website is for to help each other. I am also having to have a phone appointment with my rheumatologist eventhough I am having having what feels like electric stabs on my left sidehaven't seen him for a year. I know what you are feeling about it, I hope that your appointment is successful.
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