Those of you with the Lupus Facial Rash, do you always have it? Does it disappear? Does anything make it it worse? Is it possible for you to have a slight/light rash?
I feel that I have the rash. None of Dr's has ever mentioned it to me. Perhaps they don't see it due to my make up. I plainly see it, although it is faint.
Not that I want i a facail rash of any kind. I feel like I have enough symptoms. Don't we all!
What is the deal with this red, pinkish facial rash and swollen eyelids?
Thank you Ann A. for your reply. I love this forum. But, I want to mention this clearly is not a reaction from the sun. I know this bcz I don't leave my home. Sad to admit, but true. I also have swollen eye lids.
Momof4sons / Jean
Hi there, Oh I always have the rash. Even sunlight coming into the house makes me red. It can and does vary in intensity though mine is usually very bright. Sometimes even hot water or heat from the oven seems to brighten it these days. Sometimes people think I have a deadly disease. Now if you are trying to get into a really great clearance sale it can be helpful. I have had a couple of times where there were crowds of people and as soon as I go to a certain section people scatter. Then I have all those great sales to myself. Annoying in the early days of lupus - absolutely hysterical and beneficial these days - hahaha. Just got laugh at our lupus!
I get a reddish pattern on my face, bridge of my nose and above my left eye on my forehead and my face and eyelids swell, but I do not have a butterfly or malar rash according to my three lupus doctors. They tell me that it is the inflammatory response that my body is going thought. Mine comes and goes, but it is one of the first things I get when I start into a flare and it usually will stay until my flare starts to drop off! My family sees it and they know right away I am feeling poorly.
Just saying, Cushing syndrome, (a pituitary gland issue) is also another cause for your face and eyelids to swell. They call it a moon shaped face.
Hope this helps…Deenie
Hello Momof4sons,
This info which Deenie as stated - Just saying, Cushing syndrome, (a pituitary gland issue) is also another cause for your face and eyelids to swell. They call it a moon shaped face.
May be a good cause to what your going through and although your not exposing yourself to heat and sun...the make up may not suite your skin.
I suffer with DLE and i can't use any make up as it kicks my skin off and mascara triggers my sjogren's.
If i was you...i'd get someone to take picture's of your face with make up and show them to your specialist to see what he/she thinks....as excellent advice as been given from member's who have suffered these issues.
Hugs Terri xxx
Hi Ann,
Your so correct where the Rosacea is concerned as my youngest sister who as Lupus...she suffers with that and if her face is not flushed looking there's a rash showing. xxx
Ann,
It's funny but although we comment at times..well i'm like this alot, there's other issues which don't spring to mind straight away and when i saw you mention Rosaccea BANG my sister.lol xxx
Ann A. said:
:-)
Tez_20 said:Hi Ann,
Your so correct where the Rosacea is concerned as my youngest sister who as Lupus...she suffers with that and if her face is not flushed looking there's a rash showing. xxx
Ann, that's what i meant some things can come to we through other people's situation's. :)
Ann A. said:
I only thought of it because I saw a picture of Bill Clinton and he has had a life long issues Rosacea.
Tez_20 said:Ann,
It's funny but although we comment at times..well i'm like this alot, there's other issues which don't spring to mind straight away and when i saw you mention Rosaccea BANG my sister.lol xxx
Ann A. said:
My facial rash is exacerbated by the sun and also by times of extreme stress (there was a massive family bust up in March and I was stuck in the middle ... 2 days later - Bingo!)
As Terri has said, I use SPF 50 365 days of the year, but the stress thing I can't control as well, and I'll pick up every bug going shortly after the rash/inflammation manifests itself. It was pneumonia in March, no fun!
I always have some form of rash down the left hand side of my face, but it doesn't present any problems usually and isn't an indication that I'm having a flare up
Hello Ann,
I use the SPF 50 and don't find it that good...mind you there is stronger on the market.
Rashes besides symptoms will show more with the sun and stress because Lupus in general thrieves off stress and depression...it's a pain for that and also making your symptoms feel double what they are.
Ann i suffer with stress bad and depression and also being serious does'nt help me and all these symptoms we suffer are one truly added bonus to we.
Sorry to hear you add pneumonia in march that's a nightmare i've had it 3 times and pleurisy twice and the second time i had pleurisy i had it joint with pneumonia....so it's left me with a black patch on my left lung now.
Love Terri xxx
Oh Terri, it's reading stories like yours and a lot of other members here that makes me realise what a relatively easy time I have with my Lupus, and how difficult it will be for me if/when I deteriorate in any way
I'm terribly lucky that I have a fairly high stress tolerance, I've worked as a Police Officer (in a Control Room) for over 6 years now, and I think this helps as I'm exposed to high levels of stress every single working day, I'm always very aware through this that there are thousands of people worse off than me! I've got the loving support of my house husband and my son is a joy now (only a couple of years away from a teenager when it will be very different I'm sure!)
I'm sure that without all the support that I'm so very lucky to have, it would be a different story....
Tez_20 said:
Hello Ann,
I use the SPF 50 and don't find it that good...mind you there is stronger on the market.
Rashes besides symptoms will show more with the sun and stress because Lupus in general thrieves off stress and depression...it's a pain for that and also making your symptoms feel double what they are.
Ann i suffer with stress bad and depression and also being serious does'nt help me and all these symptoms we suffer are one truly added bonus to we.
Sorry to hear you add pneumonia in march that's a nightmare i've had it 3 times and pleurisy twice and the second time i had pleurisy i had it joint with pneumonia....so it's left me with a black patch on my left lung now.
Love Terri xxx
Hello Ann,
Wheather it be my story or anyone elses we all have a tough time one way or another, it's just how lupus kicks off a the time wheather it being symptoms or a flare.
Well i admire you Ann for keep going in your job especially where stress levels are concerned...i hope you know that stress and depression are the worst things for triggering Lupus and flares so always be aware.
You seem in the same situation as myself concerning husband and support i was never blessed with children and being born with Lupus i think as contributed to the fact because it is an inherited disease Ann....yes when your sons a few years older it will be different.
My sister was diagnosed earlier this year with Lupus as my dermo told me to tell my siblings to get tested...well the eldest is in spain somewhere but the one who's just been diagnosed her son is 22 and i've told her to tell him and she refuses because she wants him to live his life.
Ann without support it can be really hard...i mean i've lived alone and struggled but my hubby now i could'nt wish for one better and joining the site topped all the support i'll ever want...they're a huge family to me.
Love & kisses Terri xxx
Thank you all for responing to my "Facial Rash" issue. I love to hear all of the conversations you all have brought to me. Great advice.
It makes me feel like family. Truly. Because nobody really knows what you're feeling , going through, or experiencing.
Momof4sons, Jean
Hi mom of 4, I believe you are the one that in another discussion said that you were a patient of Dr.Ratains and now see Dr. Petri. I was curious how you were able to get an appointment with Dr. Petri because she flat out turned me down since Dr. Ratain is a faculty member at Hopkins and so is she. Just curious and will admit a little frustrated. Thanks!!
Queenie,
You have a right to be flustrated because trying to get in with some rheumo's is a total nightmare and hopefully momof4 will answer you quickly.
Love Terri :)
they are very noticeable ..even with makeup. i would get mine just driving to work so in car for half hour...with sun screen and hats! back than it was very hard to find moisturizer without make up in it and with a decent sunscreen. My rheum wanted me to wear pancake make up ...no thank you!
So for me depends on how sunny..intense it is. Of if lupus is very active. Your Rheum doctor should notice it immediately. You can have other things like Rosacea which has nothing to do with lupus. 'Wear Hats especially out side during midday sun. or if out for half hour or more.
ultra violent lights at my work made it worse also as day went on so work just used other bulbs at my desk area...and that did help.
Sun screen is another thing must be cautious..UVA and UVB must be used. Lavera (think how it is spelled. Catalogue Isabella which sells a lot of great items..from cleaning to jewelry and great books. I got on to them for my nieces books..Chinaberry is name of that specific catalogue. They are always friendly and fast service. But it is best... sunscreen. It has zinc oxide which is as most know is best. Totally blocks out sun period!
There is site that evalutes your brand http://breakingnews.ewg.org/2012sunscreen/...which you can see ratings for childrens on up.
The Lavera does leave some white from zinc oxide to put it on good half hour before heading outside.
You can look at what butterfly rashes....even do google search for butterfly rash with images as search https://www.google.com/search?q=butterfly+rash&rlz=1C1CHJX_enUS452US452&aq=0&sugexp=chrome,mod%3D0&um=1&ie=UTF-8&hl=en&tbm=isch&source=og&sa=N&tab=w '
that is link...but one thing about this one is it can include discoid lupus rashes which do not look the same at all. Lupus foundation of America should have photos and info on it as well.
Queenie
Dr. Michelle Petri
Email: ■■■■■■■■■■■■■■■■■■■■
www.hopkinsmedicine.org/rheumatology/contact/-911
Just call and ask for an appointment as a new patient but you must have been diagnosed with some form of lupus for her to see you. She is a wonderful doctor! I saw her back in 2010. Good luck and I hope she will help you out!
Deenie
Thanks!! I did but she refused to see me because my current rheumy is also through Hopkins!!! Oh well back to the ole drawing board!!! 
I just posted pictures of my daughter's face with what I think is a malar rash. She also gets it above the eyebrow. And it definitely gets worse both in the sun and inside under uv lights. We went shopping for maxi dresses to keep her from getting too much sun and the lights in the store gave her a very bad rash on her face. It wasn't as bad as some of the pictures on the internet but it was definitely visible. And it also definitely got worse as the day wore on. Can you take a look at them? Thanks. I was told by the rheumatologist that they don't come and go. Hers gets worse and better but never really leaves. Take care!
there are two types of facial rashes. Inquire per md which one you are exp. Both become worse by being in the sunlight or tanning in a booth. Use a SPF protection of above 30 when going outside, on face arms ad legs. The sl pinkish hue comes and goes. Make ure you are not using an alochol base product on your face, this may dry your face and worsen the discoloration. It may be one of the first signs that you are flaring with the disease process. The malar rash can errupt and is painful at times. topical tretment may be required. Both may come and go.