When did your Lupus rash start?

Was your rash one of your first symptoms (as I always thought it was) or did it occur later as seems to be happening with me. I was diagnosed with CNS Lupus and neuro symptoms last year but over the last month or so I have noticed a rash that feels like sunburn on my facial cheeks. Any tips on what to put on it to settle the burning?

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19 Replies

  • Rash was my first symptom, I got huge red blodgs on my legs witch were so painful to touch, couldn't walk and they Acked loads, they afew days later I got the rash on my face along my nose and forehead, try e45 suppose to be a good cream ad settle burning. My rash went on its own

  • hi yes mine was.i ahve had rashes on my legs fro many years btu never given a diagnosis.then couple of years ago gto the facial rash,scalp and nasal sores and sore around my knuckles and nails.

  • Hi Dalediva

    My Lupus rash on my face has developed later like you. I put a cold flannel on my face as it eases the burning. Good luck with the condition X

  • I had the rash on my back and chest for years ) flat on chest and very raised, itchy and red on the back) For the last 12 months on my face and forehead. It also feels very swollen too. I am just on hydroxy for the lupus. With the rash on back I always know when it flares because i have the most overwhelming tiredness and just need to feel my back (sometime I ache so much I can't turn to look in the mirror to see if it is there!!)

    The rash on my face bother me the most, feels so hot and I am so self conscious about it. Also get sore around my nose and inside my mouth. Even my scalp hurts, so presume that there is something there as well.

    Good luck all!!

  • Only about 40% of people with lupus get the characteristic malar (butterfly) rash. Although I have lupus with numerous organs being involved I have never had the butterfly rash although I have had the rash on my body that resembles hives and vascular rashes.

  • hello dalediva,

    I had been feeling pants for sometime but had been putting it down to grieving for my sister and working too hard. one sunny afternoon I went to my sons junior school sports day and the next day I woke with a rash on my jaw which slowly spread across my face and chest. after 6 months and many tests I was diagnosed with lupus.

    that rash was plum colour and very similar looking to a port wine birth mark whereas I now get a few blotches on my face but they are now deep purple? hydroxyl made my rash disappear :) as I became reluctant to go out x

  • I have had SLE for 12 years and only this year have i developed the rash and yes it feels like sunburn. I finally got an appointment for the dermatologist shes given me Dermovate. What i would say is go and get it treated sooner rather than later as it does spread.

  • I am sorry about your Butterfly Rash and it must be uncomfortable. There are so many creams you can try but I believe the best option is to visit your Dermatologist or GP who prescribe the right cream for you. If you try something yourself it could make it worse. Good luck.

  • Hi dalediva,

    My first symptoms of lupus was extreme fatigue followed by joint pains which went on for about 6 months and I literally got up 1 day with the butterfly rash on my face and my chest looked like it was sunburnt (it was December)

    my rash comes and goes but is very prominent when I'm flaring. I use a cold flannel for the burning but I'm sure their must be a cream. I hope this helps. Lots of love. X

  • I did not have a rash any where on my body but i had severe itching and redness on my legs, to the point i had to put ice wrapped in a tea towel on to my legs to get some kind of ease. My legs burned continually. I was then diagnosed with Lupus and went onto diaylsis.

  • Did the dialysis occur as a result of the kidney problems? I have been diagnosed SLE, Discoid lupus, sjorgens and reynaulds and have major organ involvement and have had for the past year, burning sensation of legs and feet but no one takes this symptom seriously, not even my lovely GP. My legs and feet burn and I cannot find any relief. Should I have my kidneys tested do you think??

  • I had to go on to dialysis because my kidneys failed due to lupus. i also had protein leaking from my kidneys and it made me ill..When i went onto dialysis the leg burning stopped. Does your urine have bubbles and maybe looks frothy, if it does you should see a doctor and take a urine sample with you. I also had bad back ache. Good luck x

  • Dear sandwiches, just found your reply, many thanks for taking the time. Yes on the urine and yes on the back ache. I have an appointment with the gp next week, I will do as you suggest and take a sample. Many, many thanks for your time.

  • I hope everything goes alright for you. I am glad i could help. Take care x

  • Allergies and weight loss were my first signs and the rashes came later.

  • My rash came out after all the other symtoms fatigue weightloss nausea and aching muscles.went on holiday to greece not realising I was so unwell it was 40 degrees most days (july/ august) the rash started on my chest whilst I was out there thought it was just sunburn then got the butterfly rash on my face and was diagnosed with lupus in september

  • I've got Sub-Acute Lupus Erythmatosus and Jessner's Lymphocytic Infiltrate (lupus spectrum disorder). I don't get a rash on my hands and face - the areas exposed to UV light. Just everywhere else!

  • Thanks a lot everyone :)

  • My rash started first on my face chest and back after a while it startef on my hands and feet i was unable to walk r use my hands..the doc did give me creams like a steroid cream it didnt help me at all i kind of gave up on them after couple of years but maybe it will help you.. they were steroid creams like triacinolone and cobestasol sorry if misspelled. Hope you feel better (Purple)

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