Lupus & Rash?

Do you always get the butterfly rash with lupus? As i'm not sure weather i have it or not.

As i have spots on my face so its red from them but my nose always seems to be very red and a bit red about the cheek bones and around there.

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  • No, you don't. I don't have the butterfly rash, although sometimes I have some red shading on the nose just like you but only rarely. And I have lupus.

  • Thank you . have you developed pigmentation on your hands ?

  • Interesting that you ask that. I do get redness on the back of my hands sometimes. I asked the rheumatologist whether that's a sign of dermatomyositis (another autoimmune disease) and he said that lupus manifests itself in a variety of ways, including symptoms that 'belong' to other conditions.

  • Oh ok thanks I'm going to mention it t my rhuemy on the 16th

  • I also get this with redness first - I call it bleeding under the skin and then it turns brown - is that what you get?

    I get like a symmetrical rash on my face from time to time. I take it this is what they call the butterfly rash.

  • On my fingers I have brown patches of skin. My doctor said it could be pigmentation

  • I cant tell im very freckled

  • One GP told me they were sun spots caused by the sun - not likely as I don't spend time in the sun. Do any of them know what causes it?

  • Whats that

  • Hi Loulamb, my rash is a faint dotty one and I have a red lacey- patterned skin discolouration on my palms when I'm not well.

    does that sound like yours : I have lupus ( rhupus they term it when there is rheumatoid arthritis as well !)

  • I have rheumatoid arthritis as well ! On my hands at the front i get like red dots the shape is sort of like a spiderweb . Thats the only way i can sort of describe it

  • I have redness on my face especially my nose which is embarrassing, but mine is acne rosacea. I have had it for years, am now 59, I feel it is linked to the Lupus but no one will commit to this. I feel it's part of the immune system cock up which is coming out in my skin...

  • Hi jamg3916 my daughter has lupus as I do, however it 'dematomyositis' as she has week muscles and skin markings, darkness aground her eyes but also , rosacea. So many small wonders to this disease , she says with tongue in cheek 😏!

  • It is. That was my very first symptom. Came with the swollen joints 20 years ago. Made worse by some alcohols and lime juice. And hot peppers (I live in Oklahoma where these are all common--and sun)

  • I sometimes get a red band across my nose and drifting onto my cheeks slightly, but never with any correlation to my symptoms, and never mentioned by doctors. I think it didn't help me not to have it, as I got misdiagnosed years ago and only told a few weeks ago I have SLE/MCTD that should have been diagnosed on some missed results in 2003.

  • Interesting i have the same thing going on.. in 1999 i was told MCTD and treated with plaquanil then two months later dr changed his mind said it was fibro but my charts still say probable MCTD. .. i agree considering none of the meds for fibro are helping may i ask what it was that they missed or looked over

  • I presented with sudden onset hand and knee pain, fatigue, lichen planus. GP did bloods and low WCC. Referred to hospital and repeatedly low WCC leading to investigations for ?leukaemia /lymphoma. (Also had lots of swollen glands). Low CD4 count, cardiolipinG positive, and now discovered I had strongly positive ANA and dsDNA that got missed. Only ever mildy raised ESR normal CRP and normal kidneys.

    Since 2003 been relatively well, but easily exhausted by stress and hand pain at times. Had suspected P.E in 2011, had a sepsis/allergic reaction to a small dog bite that put me in hospital for a week, and then January this year got pericarditis, followed by inflammatory Arthritis, followed by photosensitivity reactions (flares) muscle weakness and choking on saliva.... So had a pretty good remission for a few years, it its all happening now . :)

  • I had 2 red marks on my face for yrs then they went they come back when am off colour

  • Same here my cheeks and across my nose have stayed flushed (red) for a while recently my skins started feeling diffrent like slightly rough.

  • My rash is not always showing, but I do mostly get the rash if I'm hot or have been in the sun, or if I am having a flair up, but I don't know about anyone else as everyone is different.

  • Hi my name is Juli, ,I have joined this site as I don't have any answers and after researching a bit wondered if it were possible that I have lupus .

    My mum has m s , and my dad died at 43 from a heart attack , . I was born with infantile eczema and diagnosed with asthma at 7 , I had a tonsillectomy and fluid on the lung , at the onset of puberty I developed chronic acne and then found I was photosensitive, I have just been prescribed oral steroids for the latest bout of the rash which was spreading to my whole body with swelling of face and eyes , I am also very exhausted and always want to sleep, I have problems with my gums , and trouble with weak muscles and bad tennis elbow in both elbows , hip pain -and back ache , could I have lupus , not sure how to go about asking doctor as I think they think I am a hypochondriac , any answers very welcome . So glad I found this site . Thank you in advance

    Juli 🌞😑

  • Mine all started with joint pain. I've read that it can take years for some people to be diagnosed. Have you mentioned this to your doctor about maybe having lupus.

  • Hi julesey9,

    It is worth discussing the many symptoms you have experienced with your GP and asking them to refer you to a rheumatologist for further investigation, or at least do some basic blood tests for lupus such as an ANA test.

    If you would like more information about lupus and how it is diagnosed, we have a free information pack that you download or request at lupusuk.org.uk/contact-us/

  • That was my first symptom 20 years ago. Dr treated me for rosacia. Metro gel actually helps some for the rash

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