#malar rash

[hellyeahsickaf]

My aunt saw me on Christmas after I woke up late. Sort of dragged myself along in my PJs with antlers on so I can feel 1% more festive (yk the ones that are like a headband). I hadn't looked in the mirror but surely if I had, I'd see how much my face reflected my physical state. She looks at me and goes,

"Oh my gosh, how cute! You painted your nose red! Like Rudolph!"

This woman gave me covid and permanently and affected my immune system knowingly (refused treatment or precautions knowing I was vulnerable).

It was a malar rash because I probably have lupus now. I've been getting them for like, two years, all the time. I always feel insecure that I look like I'm wearing makeup. Thanks.

[crippleprophet]

I literally have had a malar rash for over a week and my doctor blew me off bc I tested negative for my ana last year. Is there anything I can do to help with the burning sensation?

oh my god i’m so sorry, i know that pain is so fucking distressing + impairing and it’s absolutely neglectful of your doctor not to both run your rheum panel again & prescribe you a topical steroid for management in the meantime. jesus christ that’s so fucked, you don’t deserve this.

feel free to just skip this paragraph if this isn’t an option for you but if you’re able to access a different doctor i think it could be worth trying just for symptom management — when i was struggling to get in with a rheum i visited a dermatologist & while she unfortunately just recommended my future rheum put me on hydroxychloroquine without doing it herself, she at least gave me the steroid cream which helps so much with the pain. & that’s something a PCP who was actually interested in treating patients rather than gatekeeping care could prescribe even if they thought you have rosacea not lupus.

gonna divide this into type of strategy just so all my advice is clustered in the same post but some of this might not be relevant to you, feasible, affordable/accessible, etc. as always other folks feel free to add advice if you have any!

basically your goal is to minimize sun (especially UV rays) as much as possible, to your face especially but your whole body as needed.

immediate term:

stay indoors as much as possible + close the blinds/curtains

outdoors: sunscreen + hat + long sleeves/pants (loose/thin material in the heat)

if you drive, bike, or do another activity where your hands are exposed to sunlight, wearing gloves; UV blocking fabric is most effective but anything is better than nothing

for pain relief: i haven’t found anything that helped more than temporarily (other than the steroid cream obv) but an unscented lotion, aloe vera, or cream can help for a little bit. similarly damp soft cloths, baby wipes, or gel bead ice packs just kinda draped gently over your face.

longer term ways to limit sun exposure:

full curtains (possibly blackout curtains)

tinted car windows

UV-blocking fabric

this is really only feasible in my situation because i’m in a car with someone supportive but should i become able to leave the house again my plan is literally just to have a blanket over my head lmao

i hope some of this is helpful & that you’re able to get some relief as soon as possible 💓💓 you deserve comprehensive testing & care + access to the treatment options you want

[foggyjune]

Who needs blush when you have a malar rash.

[lupusresearchalliance]

The malar rash, or butterfly rash, is a red flat facial rash involving the malar region bilaterally and the bridge of the nose. The presence of a butterfly rash is generally a sign of lupus erythematosus (LE), but it can also include a plethora of conditions.

[crippleprophet]

wanted: picrew where i can give myself a malar rash

[crippleprophet]

hey, sorry if this is a weird question. do you know of any other conditions that can cause a malar rash? (I have had a whole laundry list of other autoimmune symptoms for 10+ years ofmy life too) but my blood work is negative for lupus and the rash isn’t from rosacea. it fits the exact criteria for a malar rash from lupus along with other symptoms which worsen when the rash appears. if you or followers have any suggestions I am at a complete loss.

oh lord okay i’ve been researching this exact thing because i’ve got a newish malar rash too and lupus and rosacea are the only explanations i’ve been able to find so far (including searching on DermNet NZ as well as looking through rashes from specific other conditions).

anecdotally on forums some folks with sjögren’s who tested negative for lupus have had malar rashes but you know me i think it’s way more likely that lupus was inaccurately dismissed. however the medications for sjögren’s and lupus are largely the same so if my ANA is negative that’s what my gf and i are planning to push for.

if anybody else has input please lmk!

[manly-misadventures]

I think I’m developing a malar rash. Which I’ve never had before. It looks the part and it’s so warm but not itchy at all. At least I’m getting into a new rheumatologist soon… Hopefully. Bleh.

[smolangerygae]

I have a rash on my face that looks eerily like a malar (butterfly) rash. That worries me because my mum has Lupus and I really don't wanna have Lupus on top of hashimoto's. Pray for me (I hope I'm just overreacting).