Wrenmuzz12 years ago

I am sensitive to light, another side effect of not being exposed to enough sunlight. My face has wonderful red 'lesions' from the edge of my nose down to the outer edges of my top lip, with odd smaller marks too. I look like a demented clown! Ho-hum the joys of lupus.

Hidden12 years ago

I get a butterfly 'blush' instead of a rash. Looks very pretty. I look so healthy, but what people don't know is that when I'm "glowing" that's when I am feeling sick and in pain. It happens on sunny days and when I'm near fluorescent lighting for too long. I also get pain in my left arm from being exposed to sunlight while I'm driving. Sometimes I'll wear sunscreen only on this arm since I stay out of the sun for the most part.

As far as sensitive eyes go that's a definite yes. I thought it was from my glaucoma and the eye drops I have to use can cause sensitivity to light, but I guess lupus plays a factor, too. Sometimes even on very cloudy days it's too bright outside for me and I have to wear sunglasses.

Maya2312 years ago

Yes I get a butterfly 'flush' too and this is the first indicator that I am flaring. I understand you mollydolly when you say you look healthy and people comment on that! It's frustrating to look so well and feel so bad!!

I get it from UV light and I am very sensitive now (after an hour in the garden on a dull drizzly day last week I got a burning red face -I'd forgot to reapply my sunblock before going outside!). I notice that I get dizzy and nauseus from UV lights and computer screens, often with a headache and pain in my eyes.

I have a factor 50 sunhat and I carry sunblock wherever I go! And sunglasses. It can be such a pain to remember all that - i can feel anxious when I leave the house that I've thought of everything! We are considering getting tinted windows for the car.

nanny412 years ago

Hi there,my daughter suffers with severe sle,she has organ and nervous system envolvment, her body was covered from neck to toe with large painful sores until she was dxd with sle, she never has had the facial rash or flushing,I don't have lupus,but I have syjorgens and raynaulds,and I get really red facial flushing,

Hope that help, Sandy

custardpot12 years ago

The Butterfly rash is a sympton that a lot of people do not get. I do not have the rash which causes problems with doctors as a lot think everyone with Lupus should have it

ebril12 years ago

I have SLE and Raynauds and have most if not all of the symptoms, but luckily i have never had the facial rash, I am very sensitive to sunlight and have major flushing and I am also sensitive to UV lights I have to wear sunscreen even in the winter. But my daughter who also has SLE gets the rash. So not everyone gets it

Maureenpearl12 years ago

I have had the butterfly rash on and off for some years now since the nineties, I was told then it was from the herpes simplex. I was only diagnosed 2006 but I have always smeared Vaseline on my face at nights to ease the itching.

I now put factor 50 sun block on as soon as there is any hint of sun when I am out.

MandaM12 years ago

I don't have a butterfly rash just very bad atopic excema since having a kidney transplant due to Lupus destroying my own kidneys. I have incredibly itchy, mostly angry skin that drives me nuts as a result, especially at night time grrrrr!. Anti-histamines don't work even my dermotologist says that they generally don't work as a rule. I don't have a problem with the sun although i'm supposed to be careful as being on immune supressants makes me at higher risk of cancers including skin cancer. Generally i'm not keen on very bright lights and these are intolerable when i get Scleritis in either eye, another Lupus/stress related problem!

Poppygayle12 years ago

Thanks for all your comments much apreciated xx