I know many of you have not only SS but also SLE. My question is about the "butterfly rash" which is said to be typical for SLE. I have about 5-6 of SLE-symptoms - minus the rash. My antibody test showed a speckled figure and my rheumy said that means it's not SLE but SS only. However, I read somewhere that speckled test result can also mean SLE and sometimes the rash is so mild that docs may be fooled to think it's just "healthy rosy cheeks". So what is your butterfly like?
- Does it stay on your face all the time? Or can it come and go so that it only stays like a couple of hours?
- Does it itch/burn/something?
- Is the skin smooth or does the rash come with bumps or knobs?
- Something else about it?
My face is really red if I get hot. It gets really red if I take a shower or expose it to cold or heat or sun. Just to name a few. The skin under my eyes does not get red but is as if I had white circles around my eyes. The reddest red is on the sides of my nose but the redness continues over my cheeks. And makeup does not cover it :( It isn't swollen or elevated and doesn't itch - just feels a bit like "burning". I've also started to have weird rashes on my arms - suddenly, for no obvious reason, they start to itch like crazy and get covered with hives-like bumps. Then, as quickly as it started the itching and the bumps are gone.
I think soon my sanity (or what's left of it) will be gone, too! ;D
I have wondered this very thing --- then I did a search for SLE rash on Google and clicked on the "images" and holy cow! Mine doesn't look at all like that! >>PHEW!<< Dodged that one! :o
Eija, that sounds an awful lot like one of the good buddies of Sjogren's, rosacea. You should see a dermatologist about that. I have it, too, but I get broken blood vessels in my face, and I can tell when my sunscreen is shot because I get zits. Mine is controlled with sunscreen, but a lot of people need a topical antibiotic. You sound more like my father; he was "allergic to the sun" and spent the summer outdoors in heavy jeans and long sleeves and a hat.
Sharon
It does sound like rosacea for more info on the description of the different types of rash with lupus check out the link below.
http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutintroduction.aspx?articleid=453&zoneid=9
I agree; sounds like rosacea, which I also have. It does burn and sting, and rosacea also affects the nasolabial folds, whereas the typical SLE malar rash does not. The SLE malar rash usually has raised borders and is photosensitive, but not necessarily reactive to alcohol, caffeine, showers, spices, etc. like rosacea.
HTH
BTW, my ANA is also speckled which is the most common ANA pattern - many, many AI diseases can have a speckled pattern!
I always had nice skin. But, then it changed and I have the redness, some thin broken capillaries, and I even had some small lesions next to my nose.
On page 285 on table 2 this article does mention mylar rash as a symptom of SJS.
http://www.robertfoxmd.com/SjogrensByFox/Dermatologic_Manifestations.pdf
I only take lukewarm showers and used Dove soap on my face. I do gently buff my face once a week in the shower with Dove soap as the Dry skin does not slough off. At night I pat my face and leave it moist with some water and use just enough virgin olive oil on my finger tips as a moisturizer, it absorbs and is not oily, no irritants and natural anti-oxidants, etc.
You can also use olive oil as a deep cleaner. Apply a bit more massage, and gently wipe off with a cotton ball. No need to rinse. The oil will life dirt from pores and break down and remove dead skin, leaving your face clean and dewy. I get compliments on my skin.
One article I read mentioned to take 81mg aspirin (baby dose) to stave inflammation, so I have added a generic buffered one as well. I also have ocular rosacea so I take fish oil. I just try to keep things uncomplicated and in my case it has helped.
You can search roseacea and aspirin
I hope this helps for you. you probably have this stuff at home.
Take a picture when you have these symptoms so you can show the doctor. Since these things never last it is hard to explain them clearly enough. A pic is great proof and may help.
QuoteI've also started to have weird rashes on my arms - suddenly, for no obvious reason, they start to itch like crazy and get covered with hives-like bumps. Then, as quickly as it started the itching and the bumps are gone.
I just wanted to mention that I get this too - in fact, I broke out in hives last night on my face. Lasted about an hour. (No new foods, medications, skin care products, etc. and this is the second time it has happened).
My stomach has been burning/itching for two days now; bumps come and go.
I think it's related to SjS and I do keep pictures of all rashes to show my rheumatologist.
Ms, when you say your stomach do you mean like the skin over it or like a deep internal itch you cant scratch. I get an internal itch by the right side of my stomach where it like is close to the bile system I guess you call it. Its not an outside itch its deep inside..who knew you could itch internally lol
Quote from: Tivia on November 16, 2012, 11:37:01 AM
Ms, when you say your stomach do you mean like the skin over it or like a deep internal itch you cant scratch. I get an internal itch by the right side of my stomach where it like is close to the bile system I guess you call it. Its not an outside itch its deep inside..who knew you could itch internally lol
I meant the skin on my stomach - all over my abdomen, it has been burning and itching for two days :(
Oh gosh, an internal itch sounds miserable! No way to scratch that one!
Thank you for your answers, everyone. With "the sides of my nose" I didn't mean the
nasolabial folds but the sides of my nose ridge. And I don't really have any sorts of knobs or elevated skin, just the redness. So neither SLE rash nor rosacea rash pics look like my face. Ah, well, maybe some day I get so sick of it that I'll actually go and see a derm.The link from quietdynamics was really good, thank you.
Quote from: mshistory on November 16, 2012, 03:41:04 PMOh gosh, an internal itch sounds miserable! No way to scratch that one!
I remember reading somewhere that hives can also occur internally, inside the bowels :o