What were your first signs of lupus before diagnosis!?

Hello everyone...I’m yet to be diagnosed but I’ve test positive for anti nuclear and anti smooth muscle antibodies (both weak positive) ,along side with experiencing all the strange pins

And symptoms all over my body that come and go with fatigue also!seeing neurologist in December but just wondered how everyone else’s disease first began to ring alarm bells as I have not had any rashes as such??get burning sensations and had small round bruises appear but not this butterfly rash people talk about?!!

Thank you any feed back would be great

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  • looking back, I had joint issues and very fatigued(but I though who isn't?) ...then came the AWFUL rash all over my chest, upper back, lower arms...the dr on a whim did a lot of tests and my ANA was HIGH 1:1280...then had biopsy of the rash..came back positive for Lupus and possible other AI's...completed my blood work and it is "only" Lupus...no overlap of Dermatamyoistis...so in the unlucky, I feel lucky...my best to you

  • Hi Domi1041,

    Around 60-70% of people with lupus report some kind of skin involvement, so it is not necessary to have this symptom for a diagnosis. The malar 'butterfly' rash is a "classical" symptom of lupus but it only occurs in around 30-50% of people with lupus, so again, not having it shouldn't rule lupus out as a possible diagnosis.

    Are you being seen by a rheumatologist? Our recent article about getting diagnosed with lupus may be of interest to you - lupusuk.org.uk/getting-diag...

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