LUPUS UK
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How do I know if I have photosensitivity?

My skin has been absolutely awful lately, I have a pickly angry rash all over my face and the rheumatologist has prescribed Tacrolimus (spelling?) which he thinks will sort it out (I've been using it for 3 days). Today I've been outside and my rash feels worse. Could sunlight have caused this? How can i know?

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dont go out in the sun anytime at all, i have to cover up all the time use factor 50+ sun creams, thats are UVA and UVB active many say they are and arent !!! Superdrug sell this all year round. Its not easy at all but since i had a flare 3 months ago all over my face, neck down to my bust, shoulders, elbow to wrist on both arms Ive had Elocon, Dermovate creams and I apply Cetraban 3 times a day its better so much better. This skin lupus is called Discoid Lupus

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Thank you for this K. I have SLE but haven't been diagnosed with discoid lupus, and I don't understand who gets photosensitivity. I've always loved lots of light, so will be really depressed if I have this :-(

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Hi bitternwatcher, I suffer with photosensitivity, but only when my lupus is flaring. You can get a rash outside, but light bulbs, are another 'provoker'. My eyes are affected as well as my skin, so I now wear glasses that react to strong light. Eclipse is the name of a section in lupus news news and views. You might get more info from that.

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Yes indeed inside lights get me as well, and they are all LED which tend to be the ones thats make our skin fight itself! I also have glasses always had sensitive eyes so have always had reactor lenses and now i wear bi focals, as i am on hydrox i need eye tests every year do you?

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Yes, I had an eye test recently and they said apart from obviously dry eyes there wasn't anything wrong (apart from my normal prescription). But I'm having real problems with my eyes at the moment and have been referred today to an ophthalmologist for chronic inflammation and pain (caused by Sjogren's). Now I'm wondering if light has something to do with it. I am also on hyroxychloroquine.

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go to this website for more info vision.about.com/od/eyeexam... on hydrox

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Thank you kazp for all the useful info you have been sending.

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no problem Ive had lupus SLE & DLE with many complications and attached illnesses for over 30 years now so its part of me. happy yo be of use take care

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Hi kazp, yes I wear bifocals because of the hydroxy too. I last had eye test in October, and am sure my glasses are not strong enough already. I get awful pain in my eyes if I don't wear glasses. I don't know which bulbs affect me, as I am mostly ok. I know fluorescent tubes set me off. As for outdoors, I find that if my lupus is controlled I can tolerate the sun, if it is only mild weather. We have had a few sunny

days lately, and I have had to wait til the afternoon to go out. Obviously my lupus is not good at the mo. I find the joint pains easier to cope with, it's all this other stuff, that debilitate me more.

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i find this amazing that we are all on the same page, when I look at Lupus its as though we are the same but so so very different, this is good isnt it? I just cover up im not taking chances as all the areas I had the really red rare skin had had the sun! even on hazy days..

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Yes it is good, in a weird kind of way although I have to say your skin is far more sensitive than mine. I also have cutaneous vasculitis that is triggered by light. My rashes from this are like blisters. I also have a lot of blood collections under the skin. These form into a 'smudged' look. To be honest I never know if it is my sjorgrens, vasculitis, or photosensitivity that is affecting my skin or eyes sometimes. All I know is the steroids seem to take care of them all.

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Ive got CV as well. My rash is more like a crocodile having a really bad skin day, red raw, itchy then its flaky and hard, have you looked at Lupus UK PDF on sensitivity? lupusuk.org.uk/factsheets/l... Ive found this site very useful with many great facts like brain fog, thats so me, take care

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Oh dear. The evidence is stacking up my rash might indeed be caused by photosensitivity. I've just been out and my skin is pricking again. I have brain fog too, but it may well be old age :-(

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Get to your doc and get some cetraban cream apply 3 times a day ansd see if that helps? My hubby says that its my age (40) but as he is my carer as well it hard to tell him how it makes me feel, trying to say something and its gone, not remembering why i am in that room, what i was saying, I have lists for everything! Madness

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Feel relieved that I've found someone who has mentioned LED lights. My neighbours new car has auto LED lights which shine directly into my kitchen window And seem to be on all the time. Really irritates my eyes - annoys me almost immediately. Had a bit of an argument about it. Neighbour said she couldn't do anything about it but it seems her husband has.

Hate hate hate LED lights but fortunately I don't get rashes just very bad headaches :-(

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Lupus sin is sensitive to all lights, check out this PDF.. lupusuk.org.uk/factsheets/l... this is really informative and can be printed.

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hi yes iam the same as kazp too, and use same cream elecon is grt for the skin, alwayz use sunscrean too i also take antihistamines daily for the itch,,,

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Thanks for this useful info mojo.

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Hi Bitternwatcher

I also find my sensitivity to light varies depending on how active my lupus is. At times, even a short exposure will makes me feel very ill. My hubbie is now used to planning outings to the woods, or other suitable shady places on sunny days, bless him.

Computer screens also effect me, so I can't stay in front of them for too long.

My rash was diagnosed as sub acute cutaneous lupus, & a systemic lupus diagnosis came later.

You may find the Eclipse website helpful, which you can access from the Lupus UK site. There are some patient experience stories of discoid lupus on the St Thomas' website, & sites offering UV protective clothing in the News & Views mag.

Take care & best wishes. x

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Thank you very much for this roobarb. I've just seen my GP, who wasn't very enlighteniing about photosensitivity but said to use sunblock. I've looked at the Eclipse pages in the Lupus magazine, but haven't looked at the website, thank you for suggesting this.

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Hi ask for........no insist on getting referred to a dermatologist and get yourself tested to see if you are photosensitive. I am and since being told I am I avoid the sun like the plague, I have no low energy lighting or florescent lighting in my house I completely cover up whenever I go out, I wear gloves scarf and cover my head all year round as well as wear clothes thick enough to block UV rays, yes I get hot but being hot is more comfortable than a lot of the symptoms I have during active flare. I used to get regularly hospitalised until I was referred to a dermatologist and told this was my problem, I wear a factor fifty sun cream on any skin that is exposed and reapply regularly.

If the sun is very strong or the UV index is high I don't go out unless I absolutely have to in fact I was nick named the "vampire" as I tend to go out more at night in the summers which includes when it is snowy as the sun reflects of the snow and the UV index doubles in strength.

Good luck I hope that this might have helped you

Madmagz x

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Thank you very much for this advice M. I saw my GP today and am seeing the dermatology specialist at the practice tomorrow. Let's hope he'll know what to do as my skin is worse than ever.

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If the rash is just on your face and not on other areas exposed to light ie chest, neck, arms, hands etc it may not be due to sunlight. Perhaps you could ask to be referred to a Dermatologist for a second opinion.

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Thank you ShellW, that's what a GP at my surgery, who is a qualified dermatologist, said. The rash is getting worse and spreading down my neck. It pricks like pins sticking into me, especially in the evenings, and is driving me mad. My skin is now the texture of sandpaper and becoming flaky and my eyes are becoming puffy. The GP has put me on antibiotics for 4 months and told me to put on tacrolimus every other day, but suddenly that started to make it worse so another GP told me to stop that. I have an appointment at the Lupus unit at St Thomas's at the end of August now, when the dermatologists should be able to have a look at it. My face is burning hot as well and a bit lumpy, people say it looks swollen. It's just another symptom to add to the list.

Thanks so much for your response.

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Q. How do I know if I have photosensitivity?

A. If a rash only occurs on sun-exposed skin then it is definitely photosensitive.

[ NB: sun-exposure can exacerbate internal-organ involvement without producing any photo-distributed rash , i.e. photo-distributed rash is not a necessary feature of photosensitivity ].

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