Possible Malar Rash

General
1

So on my last doctor appointment I finally asked about something that's been happening for three or four months. I didn't think much of it at first, but as it became more common, I began to worry. Eventually even hubby was noticing it. When asked, even my brother had noticed!

What I experience is what feels like my cheeks flushing. It feels a lot like when I overheat, or if I'm blushing uncontrollably. The skin is warm to the touch, feels heated from below. Kinda like when you get a bad sunburn that isn't showing completely yet. It's always only on my cheeks, not my forehead or lips or anything. I always check to see if I have a fever, but I never do.

So when I told my rheumy about it, he immediately asked me to take pictures, as he said it could be a malar rash. I hadn't mentioned it before because (to me) this does not feel or look like a rash, it just feels flushed. Well, that was a little over a week ago, and hubby and I both assured him that it wouldn't be hard to catch, since it happens reasonably regularly. I was secretly hoping it wouldn't happen again, while also hoping it would. (Y'all understand how crazy one's wishes can get when dealing with this stuff.)

Last night it showed up again at bedtime. I was nervous and anxious about whether it really was the flushing or not, but it swiftly became obvious that yes, it was. So hubby took a picture of me. Sure enough, it clearly shows that my cheeks are pink, and it does resemble a light malar rash.

Now, when I started this journey about a year ago, I went marching in with the fear of Lupus. However, there wasn't anywhere near enough evidence of it being Lupus, and I was sorta relieved to end up just being diagnosed with UCTD. Hubby was worried I would be so obsessed with Lupus that I would try to manipulate/fret all my symptoms that direction. So I've worked hard at accepting the limbo of UCTD. I think I accomplished my goal of being settled with it. Of course that means that life has to throw a wrench in the works. Seems like having a malar rash would push things decisively back towards Lupus. And even though I knew it was a possibility, it scares me. Intellectually I know it won't change anything... I'll still be given the same meds to treat what's going on with me, and he'll still order bloodwork regularly to watch for further signs of problems... but emotionally it's hard.

Would some of you please share how having a malar rash feels to you? Does it feel like a typical (normal) rash? Does it feel just like the skin is blushing? Does it usually accompany you feeling worse, or is it random? Is it an indicator that your Lupus is flaring?

Regardless of what y'all have to share, it will help me feel a little more... well, I don't know. Like I have more information to work with.

2

Hi Talencia. My rash feels like a sunburn in heat and pain. It covers my cheeks like a monarch butterfly and goes across the bridge of my nose. Sometimes I get the rash and then go into a flare and sometimes I just have the rash. I hope you can get some closure and feel better. Since I’ve been on Quinacrine and Retuxin, the rash happens more often without a flare.

3

Yes you are describing exactly how my maylar rash felt. When it happened I knew I was in a full blown lupus flare. Since I have been on plaquenil I haven't had one to that degree, but it is always there. I am photo sensitive and try to never stay in the sun very long. It just zaps my energy and can put me in a flare.

Hope you will feel better and your rash gets under control!

4

Greetings, I have had lupus for about 20 yrs or so. I get the flushing or blushing a lot. I get really warm and feel like I have a sunburn. I have had that for a very long time, but no rash at all with it. I always wonder if one day I will get the rash. People always comment that I am very red. I just say really? And leave it at that. I am on plaquenil. I never go into a flare when that is happening. It does happen often. So good news from me on that. The whole lupus thing brings so many changes. It’s best not to worry about what might happen, but just deal with what you have on your plate for the day. My dr. Told me, we only know what we know today, that use to frustrate me to no end. Now having had lupus for a while, it makes perfect sense to me. Nice to hear from you.

5

My rash is always there and I was diagnosed with SLE over 10 years ago. It will go to a lighter shade, but always comes back to bright red/purple. Stress and sunlight are the worst. Sitting at the computer will make it go red, too. It feels hot from the inside out...like a sunburn, but in reverse. It doesn't peel or have pimples. Lots of people comment on my "flushed" face all of the time. During my last hospital visit in December, the nurses kept commenting on my fever rash....it wasn't from the fever...the fever just made it worse. I had to keep explaining about my SLE!

I don't wear makeup of any kind and my skin is better off for it.

I read that 40% of SLE patients will have the butterfly rash. Roseacea is common, but it has nothing to do with SLE or the butterfly rash...two different things.

Prayers for comfort and answers!

Lori

6

Jabber,

ANA negative is not a reason not to look at lupus. 1% of us are ANA negative, including myself. A biopsy was required to find mine, this after TIA, seizure, stroke, uncontrollable BP, etc. There are several items on a "list" that if you meet whatever number of them, a doctor can diagnose Lupus. Don't give up if you feel (know) something is wrong. Although it may not be SLE, there are several other things could be occurring.

Big hugs,

DeAnne

jabber said:

Hi, I have had the butterfly rash for 23 years, year round. Doctors, friends andy kids notice it. It doesnt hurt. I just don't need blush on when wearing make up, save a bit of money. Since my ANA comes back negative I am not Dx lupus even though I have other symptoms too.
7

Get the flushing when I'm tired or don't feel well. In the beginning I had no rash, just a peeling nose which the plaquenil remedied.

8

I get the same exact thing. I’ve posted here about it before. It can be so embarrassing. I also am dx’d UCTD.

9

I typically have the malar rash the majority of the time, in varying degrees (worse during a flare or high stress times). Sometimes it's raised and sometimes, more of just a blush. I think I saw a comment from someone else here about not needing to wear blush...that's pretty much the case for most of the time, year round. It does tend to brighten, with UV exposure, though. My stress has been somewhat reduced over the past few months and it seems like my malar rash has subsided, along with the decreased stress. The rash use to really bother the secretary in the building where I work. She would always ask me if I was feeling bad. I have explained so many times. I tell her sometimes when my face is red, I do feel bad, but sometimes, it's just red and I will say, "Remember, I have lupus". I know she means well and is worried about me. I have been fairly lucky. I have not had any internal organ involvement, that I am aware of, but have had several bothersome rashes (other than the malar one), chronic fatigue, and muscle/joint pain. I have also lost all of my hair, now. I have taken Plaquenil off and on for the last 11 years and I think it has kept many symptoms at bay. Hope you get the answers you seek and that you are well.

10

I have just recently been getting the mylar rash. The first time I noticed it, was after I colored my hair at home. Since then, I have noticed it more My husband will ask me how's my lupus? And he'll say I have a rash... that's why he's asks. I thought I was having hot flashes - and going through menopause, but since I've started taking my Vit D regularly again, I haven't noticed the flashes? Not sure if its helped, or just a coincidence.

11

I agree with Jabber. I was also ANA negative and my Lupus was found by biopsy. All the information I've read indicates that no two of us have the exact same symptomology, which makes it really hard to advocate for a strong diagnosis. My docs always tell me the important thing is for me to feel better. Personally, though, I am such a cause and effect sort of person that I have this really weird need to know what's causing me to feel bad and getting the response, "You have Lupus" isn't quite enough to settle my brain.

whathappensinvegas said:

Jabber,

ANA negative is not a reason not to look at lupus. 1% of us are ANA negative, including myself. A biopsy was required to find mine, this after TIA, seizure, stroke, uncontrollable BP, etc. There are several items on a "list" that if you meet whatever number of them, a doctor can diagnose Lupus. Don't give up if you feel (know) something is wrong. Although it may not be SLE, there are several other things could be occurring.

Big hugs,

DeAnne

jabber said:

Hi, I have had the butterfly rash for 23 years, year round. Doctors, friends andy kids notice it. It doesnt hurt. I just don't need blush on when wearing make up, save a bit of money. Since my ANA comes back negative I am not Dx lupus even though I have other symptoms too.