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Life With Lupus

Blush instead of lupus rash


#1

Can you just get red blushing in the sun that looks like a light red lupus rash and have it go away... a while later--- I don't have a "lupus rash" but I get what looks like one in the sun...... then itll disappear after ive been inside for abit


#2

I get a blush just from over exerting. In the car with the top down, even if just to the store and it usually goes away within a day or so. I consider it a savings on make-up!

Remember we are incredibly sun-sensitive, so use of sunscreen is very important not to go into a flare.

Hope this is helpful.

DeAnne


#3

I actually dont even get a rash on my face at all but do on my chest. I ABSOLUTELY LOVE the sun…but now my enjoyment is with caution. But since I’ve gone 100% natural in my diet and products Omg!!! Im a hippy! Lol but seriously my rash hardly shows itself


#4

I've never had a lupus rash, but lately I've been getting a blush on my checks and nose when I've been outside. It burns like sunburn, but it goes away within a few hours. It's weird!


#5

I have the Lupus rash pretty much all over my body. It grows with time. My Dr told me not to go in the sun at all, but if I did use at least 5 SPF lotion and wear long sleave white shirt. I was a sun worshiper all my life and now I need to time working outside either early morning or evening. :(


#6

That’s exactly how my lupus face rash is. My doctor calls it a malar rash. It’s specifically brought on by the sun, and for me, fluorescent lighting.


#7

Yep, this is the exact rash I get, face and upper chest but if I went in the sun in bikini like I used to my entire youth, it would show up everywhere. What you are describing IS a lupus rash (there are several, and the discoid and other types are more common in Cutaneous Lupus which is the less systemic form.) Please read Ann A.'s main discussion post about sun sensitivity (we have posted links there to read more), but take that indicator rash seriously! The rash itself doesn’t need “treatment”, but it’s part and parcel of the systemic disease and one of our very few visible indicators…



You’ll notice it makes a good signal of the start of flares, but even more importantly it’s one of the factors initiating that flare! The redness and feeling of burning tells you there was enough sun to trigger an autoimmune inflammatory reaction in your skin, which will then spread systemically throughout your bloodstream. I found last summer as I was in my disgnosis phase that taking a hot shower after sun exposure (dilates the blood vessels and allows those autoantibody complexes to spread faster!) completely knocks me out for the rest of the day with a mini-flare. The scariest part is the effects on my brain/alertness… I’m a suspected early-stage NPSLE case, and I feel my headache, extreme brain fog (like can’t-see-2ft-in-front fog), and waves of near unconsciousness pass through if I get too much sun. I will also feel terrible for 3-5 days after, longer if I encounter another trigger (like my insomnia chicken-egg cycle) in the mean time.



I notice MANY on our site claiming to be former sun-worshippers. This is no accident! Sun exposure is thought to be an initiating environmental factor (one of several, but it’s the most clearly linked concern) in developing actual SLE in people with a genetic predisposition. One of the genetic defects we are thought to have is improper clearing of sun-damaged skin cells (apoptosis, an immune system mechanism of killing our own cells on purpose to contain damage)… In people prone to SLE, it’s thought to be both overreactive and prolonged, leaving exposed much more of that nuclear debris (aka, the stuff our ANAs and anti-dsDNA and anti-Sm antibodies are directed against!) It is also suspected, as in all autoimmune diseases, that we have faulty regulation of the B-cells producing self-antibodies (autoantibodies), which should be selectively inactivated for having such an inappropriate (and devastating!) target of action: our very DNA and nuclear proteins, a fundamental component of every cell in our being (except red blood cells, no nucleus in those once they mature! Fun nerdy trivia :wink: )



My profile pic shows me on a super sunny warm day on the ferry towards Seattle after an unbelievably hot and sunny WA-coast surf trip for 4th of July weekend 2011. You can see how pink my nose, forehead and cheeks are in the photo. I didn’t find out about having SLE till another year later, incidentally right after moving to sunny California (indeed to the “sunny side of the Bay” across from San Francisco’s fog!) but I did notice a steady increase in sun reactivity over quite a few years before that. The only reason I’m not wearing my favorite cowgirl sun hat, which I wore everywhere in my sunny adventures that final summer of soaking up the outdoors, is because of the wind on the boat! I miss those days terribly, and thank my lucky stars I had also had a dream Maui surf vacation earlier that year, and a perfect Baja surf trip in 2008… Because I now have to face a life withOUT sunny vacations, tropical surf getaways, and even Seattle summers celebrating the outdoors… Not to mention missing out on exploring the NorCal wilderness without extreme precautions and late in the afternoon. It’s a painful loss, the biggest loss of the “life I once knew” of revelling in the precious opportunities for sunshine in gray Seattle (even the gray days can take me down, I’m sensitive to UVA, which gets through clouds, windows, and fluorescent lighting!)… Not to mention the future I anticipated of steadier sun (and moods) in my new home. However… Active SLE makes it unlikely I will ever be able to afford the cost and stress of travel to the sunny places I most want to visit (Brazil, Cuba, Peru, Turkey, SE Asia, India, Australia/NZ, Africa…), debilitates me from surfing in any of the more challenging conditions worth traveling for (if not entirely!), and makes it painful and exhausting even to complete a nature-walk (or the car trip to get there!), much less a major hike!



So, given the prospects of losing so much and adding so much suffering, I severely restrict my sun exposure, cover up and wear sunscreen when I must be out in the daytime hours, avoid fluorescent lights as much as I possibly can (SO not worth having flares due to those dreadful things! At least the sun is glorious before the backlash…) I do all of these things to limit my cumulative UV load, in the hopes that it will help me get my health back to do all the activities I once loved, so that sun-avoidance while doing them even becomes relevant again! And of course, return to gainful employment… I’m only 25 and have been unable to work for a year, and am praying that everything is quiet enough pn the lupus front for me to succeed in grad school the next few years and a new career after that. And if I never get back to that level, at least I love to dance, which is done late at night, and if I can ever accumulate the money for the ticket I could spend my time in Cuba dancing under the stars on the beach till the sun comes up… What the real Cubans all do anyway, since they get enough sun to be sick of it!



Ok, that’s a long way of saying take the sun seriously, not just out of fear for it making things worse (which it does), but rather the perspective of what restraint and protective measures will buy you in terms of your health, immediately and in the long run. I’ve learned to be happy for the sunshine while seeing it only through my windows till that lovely evening walk. Sunrises or sunsets are a very appropriate way to worship that sun god you once soaked up in peak hours… Practice and enjoy safe sun!



Brynn


#8

Quick note, malar just means the location!

The “malar eminence” is the cheekbones. So, you can have a malar flush (the redness indicating extra blood there from inflammation) or an actual rash with skin pathology detectable by biopsy… Which is likely established there on the malar eminence (and upper chest, as opposed to regions normally hidden from the sun) because of chronic sun exposure after onset of lupus causing lasting damage… It’s all related, but the flushing is at the indicator and early in the disease pathology, versus the fixed rash being later stage effects of damage from the continued exposure to sun. Most of us aren’t diagnosed in the early stages but rather after much damage has already occurred (I was lucky because I worked in research in this field, thus knew to get pushy about my vague and worsening symptoms and had access to great specialists right away!)

A way to think about it is looking for protein leakage in the kidney (evidence of early problems with the kidney, that may be able to be reversed or contained with treatment and lifestyle changes), versus kidney failure and eventually needing a transplant. They are on a spectrum, and in both cases it’s immune complexes recruiting inflammation to where they settle, whether that stays in the skin, the linings of the blood vessels, the glomeruli of the kidney, the pleura of thr lungs, the pericardium of the lungs, or the CNS… In all cases, action at the early stages will thwart lasting damage!

Brynn


#9

My skin condition is more a blush than rash. It gets NEON red at times. I am asked if I have a sunburn all the time. My Lupus diagnosis to date, encompases a connective tissue disease. At this point I have no insurance so any further diagnosis will have to wait. I have had a huge sensetivity to florescent lights my entire life affecting my vision. I work under florescent lighting and continue to have vision problems with it, never did I connect that with Lupus. My kidneys have tested well, although I have sharp pain in the lower left and right sides of my back daily. I am supposed to get a skin biopsy, but again it will have to wait. My enlarged red blood cells and elevated red blood cell count worries me more than my skin condition, but again no diagnosis yet. I was a sun worshipper and do think that exposure may have to do with what I am experiencing now. I also wonder about the possibility of having a mild stroke in my past, but I don't know how to approach a Dr. concerning that possible connection as I didn't see a Dr at that time. This disease seems to emcompass so many symptoms! It is making truly CRAZY...then again maybe Lupus Fog? LOL


#10

Ann,

I cover up as best I can... sunscreen, hat, sunglasses, etc. I look funny when I'm outside with all my cover-ups, but I try to do my best.


#11

I never go out without hat and sunscreen even in summer so my cheeks are blocked by hat brim. Yes i make sure it is that wide....if it is worse sun times of day 10-2pm... yes i get literally what looks like butterfly wings on both sides of my face...if sun get it...car is worse for that glass reflection and boating days in midday is not possible for me either.

Also i get actual pain on my arms legs if too much sun is hitting them. My chest gets red but this happens to non lupus women as well...think skin so easy place to burn.

i loved swimming at Tahoe ....taking book , read and swim all day...as my mom said we were storing for bad winter weather days...yea storing for skin cancer! Also i am olive complexion so i do not burn ...i think i have two times kind of ...turn to tan next day.

I also agree wear largest sunglasses and darkest lens. Ideally eye doctor said we should wear those kind they sell for ten bucks at eye docs that can cover your reg glasses ..wrap around so sides are protected as well. very ugly but hey works!

Ballerina sure you do not look funny......when i had to start wearing hats....no one was and it was very hard to find nice hats...not cheap drugs store straw hats. Now we have great styles to choose from and even great nice sun safe clothing...that is not badly priced. I could not afford it it as so high....over hundred just for shirt.

so yes i get rash on both sides and nose even with wide brim hat ....


#12

I mean 50 spf...lol



lol said:

I have the Lupus rash pretty much all over my body. It grows with time. My Dr told me not to go in the sun at all, but if I did use at least 5 SPF lotion and wear long sleave white shirt. I was a sun worshiper all my life and now I need to time working outside either early morning or evening. :(


#13

I used to get rash only after Sun or shower much like you. it gets worse over time and stays with you. always use sunblock and hats as that rash will stay eventually plus Sun makes you flare bad. in college, before we knew what I had, I got second degree sunburn in Hawaii on jazz band trip. that sunburn gave me pneumonia. nearly died. take the sun seriously. Love, Sheri


#14

I get exactly the same thing. Feels like it is burning also on my arms.