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I had been posting on the MS board for awhile. Like everyone, it's a long story.
Neurological symptoms, joint issues that went away, and a bad case of
ologist-itis.;) ANA tested about a year ago - negative. Recurring ulcers in my nose, fatigue fatigue fatigue, progressive neuropathy. Medical roller coster for the past 2 years with more differential diagnoses ruled out than you can shake a stick at.

Lo and behold I woke up about a week ago thinking 'what is going on with my face', because it felt like my cheeks were burning. I looked in the mirror
to find a pink 'burn' like rash across my cheeks and nose. It's not from the sun, no new facial products or anything like that. It got worse through the day and I put cold compresses on it to alleviate the burning sensation. It hung on for 3 days and then faded somewhat. Today, while driving to work, it started burning again. This time though it's like the rash on my cheeks has progressed down my neck and in the centre of my collar bone. I was a bit run down right before this started and now have a cold.

I took pictures and will show them to my doctor when I see her in a few weeks.
Tonight it's worsened again. Really feels like it's burning. I have no idea if it's a malar rash or not, but my questions are these:

-does your malar rash 'burn'? If so, what if anything helps the burning sensation?

-Is there any reason why I should been seen right away? I did get into my primary care doctor without an appt last week. She quickly looked at it, drew a picture of it on my chart (looks like a butterfly to me) and asked if I needed anything for it. I didn't know, so I said no and that was it until my actual appointment.

The burning sensation is manageable, but quite unpleasant.

Any thoughts, suggestions or info would be appreciated.

Gully, hi. I'm probably not the best one to respond because I've only had discoid and SCLE annular lesions, never a malar, so the following is what I've read rather than experienced.

The literature says that malar rashes "tend not" to burn or itch. Presumably that means sometimes they can.

The fact that your facial rash spread makes me wonder if it is a malar rash. I'm just a (dumb) patient, but other things also come to my mind. (1) Acne rosacea, which is very hard for even a professional to distinguish from a malar rash. (2) Some OTHER lupus rash that causes big red areas, maybe tumid lupus? (3) Maybe even a drug reaction. Are you on any meds for anything?

But even if this turns out NOT to be a malar rash, given your OTHER symptoms (fatigue, recurring nose ulcers, neuropathy), I'd definitely want a full lupus work-up, including ANA, the various ANA subtypes (anti-ds-DNA, anti-Sm, anti-Ro, anti-La, anti-RNP, etc.), and urinalysis.

For the record, it's possible to have lupus to some degree without a positive ANA. In discoid lupus, also called cutaneous lupus, considered the mildest form of lupus, people remain negative for ANA and the various subtypes. Very few in this group progress to systemic lupus. While considered mild, this type can certainly cause substantial cosmetic damage.

Also, about 1/3 of people who test positive ONLY for anti-Ro remain ANA-negative: it's thought that something in the anti-Ro is masking the ANA result. People who fall in this subgroup may meet < 4, 4, or > 4 of the 11 criteria. In other words, some straddle the border between cutaneous lupus and systemic lupus---while others get the full range of problems seen in systemic lupus.

Have you seen the sticky posts (permanent info posts) located above the user threads? They contain symptoms, diagnostic criteria, labs & tests, skin problems seen in lupus, etc. It's all basic info but an excellent place to get your feet wet.

For your facial burning, maybe a mild steroid cream would help? If I tried one, I'd go easy at first because they can thin the skin if over-applied. Maybe try on just a tiny corner first? And it occurs to me that you probably don't want your redness to disappear completely before a rheumatologist or dermatologist sees it in all its glory? Anyway, let us know how you're faring, when you have time, that is. Sending warm wishes, sincerely, Vee

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