I'm extremely new into diagnoses, can malar rash still occur on treatment?

[u/thehalloweenpunkin]

I'm on a prednisone taper, and the last two weeks I've noticed the malar looking rash. It's very hot and feels almost like a sun burn, it looks like it might have gotten worse in the last few days. Is this something I should contact my rheumatologist right away about?

[u/Missing-the-sun]

Everyone’s rash — if they have one at all — is a little different. Mine comes and goes, but it’s always at least a little visible. It’s more prominent when I’ve been in the sun or the heat for any amount of time, or if I’m flaring. I’ve stopped feeling so self conscious about how it looks though — it’s been very en vogue as a blush application pattern lately. 😅

I have a soft cool pak eye mask that I keep in the freezer that fits perfectly over my cheeks too, I use that when the butterfly gets too hot.

[u/thehalloweenpunkin → u/Missing-the-sun]

I usually have a light rosey nose and cheeks. Like I'm a little flushed, but it's so red now and hot that it's so bright. Is it normal though for it to happen on prednisone and Hydroxychloroquiney. I feel so silly for asking, I was just diagnosed at the end of last year so I feel clueless at times.

[u/Missing-the-sun → u/thehalloweenpunkin]

Not silly for asking, no one tells us these things.

I will still get hot and inflamed in the face if I overdo it and/or if I spent too much time in the sun during the day. It’s usually worse in the evenings. Adding more rest into my routine and taking breaks instead of pushing through symptoms has taken the edge off this in a major way, I haven’t had the hot face flush in months.

For either type of temperature dysregulation, hot or cold, touching something of the opposite temperature (hot pad on cold feet, cool pak on warm cheeks or ears) to manually “reset” your internal temp can help a lot. Once your body gets a wacky temperature, it isn’t easy to get it to behave again on its own. You’ll see a lot of us swear by electric blankets for cold limbs for the same reason.

[u/Fairerpompano]

Mine never goes away, it just gets really red and hurts, or it calms down and isn't as red.

[u/thehalloweenpunkin → u/Fairerpompano]

I had it a few years ago for about 6 months and then I was on high prednisone for pneumonia and bronchitis and it cleared up. This is so hot and really ugly red, I just thought it wouldn't happen on all the meds.

[u/Fairerpompano → u/thehalloweenpunkin]

I hope you can get some relief from it soon!!

[u/thehalloweenpunkin → u/Fairerpompano]

Thank you me too!

[u/Capable_Way_876]

Sorry to be the bearer of bad news, but each and every symptom you suffer from can occur while receiving treatment. Speaking from experience, if you happen to be assigned a rheumatologist who treats based on lab results and not based on symptoms, you are fucked, because positive ANA can confirm a lupus diagnosis, but should only be used after a diagnosis is established to determine the likelihood of a flare. If you don’t have a positive ANA one day, but have symptoms present, hope against odds your rheumatologist is not an idiot.

[u/thehalloweenpunkin → u/Capable_Way_876]

Ugh that really stinks. I'm still trying to learn all about this. I've always had a positive ANA titer the one I had back in October was 1:1680, and was positive for Smith antibodies I believe that's what they were called. I had a TIA in 2023 and then what finally got the ball rolling was retinal vasculitis and uveritis in October which made me lose about half of my vision in my right eye. Now I've been having the rash and some joint pain. I don't have an appointment for another few months so I thought I'd ask from you veterans lol