I am trying to undertand what's happening when I get a malar rash and feel rotten after being outside. Yesterday, 9.00 am went outside (without any protection) initially to feed the birds but then spent 15 mins, checking the garden and playing with the dog, basically forgot myself. Came in felt suddenly quite grim, by 9.00 pm a 'gentle' malar rash had appeared.
Question is - does any UV light on any part of my skin lead to a malar rash or is it only the UV light that hits my face that causes the reaction? If I'm honest at the moment as no other part of my skin is visibly reacting I just protect my face and wear long sleeves.
Is it my immune system reacting to the 'damage' that leads to me feeling so grim? I suspect so but just after 15 mins is starting to feel a little extreme!
Does the light hurt your eyes - before and after? Do your eyes go a little burry? Is this resultant fatique or photosensivity?
So many questions - sorry but I know many of you have done incredible research into your condition already. Hoping you can shed some light (ha ha) xx
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RosieA
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Hi Rosia.if you google lupus and uv sensitivity webmd have a very good article on it.i also went out yesterday with the dogs and to peg out washing...I got a headache.if I dont wear my hat I get a headache after about 30 mins outside.my eyes flare they burn and itch.i take azithromycin and hydroxchloroquine which are known to cause uv sensitivity and I get free reaction lens as a result.my joints also ache and I feel lousy.after a couple of days indoors it all goes.its part of living with lupus I'm afraid.i was never uv sensitive always been an outdoor person .you should also avoid windows and fluorescent lights.as I understand it regardless of where sun hits the skin the rash occurs on skin that is most exposed to the sun in general i.e face ,neck.I dont get the distinctive shaped rash but mine can feel sore and sensitive. Hope it all helps regards and hugs SML xx
Thank you for this. Have read the site you mention. I must admit it is making me a little depressed at the moment - perhaps as the sun has reared it's head again! Wore two T shirts today, one back to front to provide extra cover, hat, glasses and cream - spent good 45mins gardening - so far so good. I think it's all about establishing new habits and fully understanding it all.
By the way - bought an equfleece for pups! Great! Can't wait for a rainy day now for two reasons. xx
You wont regret buying them for one minute.my 2 have theirs on now to dry them off after they didnt miss a rock pool on the beach this morning.🙄. No more shaken dirt up walls or doors .no more dirty streaks along the sofa.ive even taken a bucket when it's really muddy and stripped them off before they get in the car ,fleeces in the bucket 👍
Try not to let it depress you .these things are manageable if you are prepared to adapt.next year if there is a heatwave forecast you will know it's a do nothing spell .I also (and I know this sounds silly) wear my hat indoors because (there is method in my madness) i nip out to the bin,let the dog out for a wee,water the greenhouse and before i know I've been outside and I've got a headache.i dont stop to think hat before bin .
Will give the tickle! Thanks. Yes I think a hook by the door for the hats is now a must. Survival kit needs to be all at hand. It's all just habit. Next year, as you say, will probably be easier... you never know I might even have a full diagnosis. Yipee. xx
I hope you do it makes it alittle easier especially if people make you feel like it's in your head.i have 2 hats I keep meaning to put one in the car as that's when I often get caught out...set off and the sun comes out .you will get your head around it all eventually and adjust accordingly. I'm nearly ready to hibernate my big outdoor jobs are done just waiting for some bedding plants and I have some pots I need to move into the yard as the cockle over in the wind.patio furniture is to go away when lawnmower goes to bed.then ots time for the aches and pains associated with winter....oh joy . Keep smiling xx
Rosie - I can’t answer that question. I can tell you a few things that may lead you in the right direction. The UV light creates damage which starts the inflammatory process. I have had rashes on arms after playing tennis when using full sunblock. Your face was exposed to UV rays so you could not really say it was not the exposure just because you used protection.
The reaction can also be systemic, which is why you feel tired and maybe get fever.
The best thing to do is get a hat with a veil or a face cover. I bet you won’t get the rash.
It is an adjustment. I still hate it. But the new products have made things better recently.
Thank you. I am on a mission now to buy myself some proper protective T shirts and new hat as I am not sure how long they actually keep their protective factor and mine must be a couple of years old now and decidedly battered after gardening and getting caught in all sorts. ( I only bought it so that my hair colouring would last longer - oh such simple vanities) I'm also sure I saw a waterproof one.
What you says makes sense. A combination of systemic and localised response. My eyes certainly find even looking through the window outside quite painful. I'm hoping to get my blood results tomorrow - maybe a little more of the jigsaw. I think they're looking to see if the titre has changed + ENA panel + kidney function. Fingers crossed eh. xx
Yes that's just what I'm after. Just read an interesting article about the mean time it takes people to be diagnosed , something like 6.8 years. The number of people diagnosed with health anxiety was astounding. My grandmother suffered dreadfully with, we now realise and AI disease, and was labelled a hypochondriac - so sad when I think back. I loved her deeply and she kept her suffering mostly to herself. 2020 you would expect something different. Reading that I realise how lucky I am with the team I have access to.
Pups enjoyed tummy tickle and is now ensconced on the sofa with our 17 year old cat. Quite the companions. x
It could be from your Lupus medication. Does your pharmacy, or wherever you get your prescriptions from . Give you information of the interactions , or side effects? If not you can google the medications side effects, and drug interactions. I don’t know what they use in the UK to treat Lupus. Here in the states it can be a cocktail of a lot of medications. I take Methotrexate, which is a low dose chemotherapy, pill form . With Taking Methotrexate the patient should not have a lot of exposure to sunlight. Lupus is a very challenging disease. And unfortunately we have to deal with chronic fatigue. I know when I’m in the direct sun for a long period of time . It drains every ounce of energy right out of me . Or should I say adds to the exhaustion I’m dealing with . But check your medications interactions. One or more may state to not be in direct sunlight too long . Feel better. Keeping you in my prayers 🙏🏻💜💙😊🦋
Firstly I would recommend reading Lupus UK's article on photosensitivity. This may help make things clearer for you. I'm not sure what you mean by a gentle malar rash so cannot comment on that I'm afraid. Do you mean that it only lasted a few days? Or was it less bumpy / elevated from the skin than you've had previously?
The malar rash can appear when lupus is active and flaring for any reason. This can be stress, the condition not yet being under control, hormonal or a build up of UV exposure. If you are having a flare your other symptoms will be awful as well, it will last for anywhere between a few days and a number of weeks, and for most of us our bloods to indicate lupus activity / inflammation will go sky high. The rash is just one of the symptoms of a flare, and for some it is not ever present.
For me, I have severe photosensitvity and went to Marrakech for my 21st birthday. I was on high steroids and wore sun protection. I naively believed covering up, only going out at certain times and just applying factor 50 to my face, chest etc was enough. It triggered an awful flare that lasted two months and my kidneys were quite badly damaged.
In response to your questions, photosensitivity is a systemic thing so it is not necessarily the sun causing a rash. If you have had prolonged exposure without your disease being under control then this will build up, causing inflammation and triggering a flare. To minimise UV exposure you should cover up where possible, stay out of the sun at peak times, make sure to stay away from strip lighting and apply an spf 50 with UV 5 stars (or 4 plusses) to all visible skin every single day. This includes the backs of your hands and wrists, which many forget (and is a nuisance with all the current hand washing). To apply spf properly you need to do two layers, one after the other. If you sweat or go in water than you need to reapply, but studies have found that the every 2 hours rule is not necessary if you are in an office or just sitting around in a lower temperature climate.
For your current circumstances, 15 minutes at that time in the morning is not normally sufficient for a photosensitive reaction unless the UV was especially high, or you were already close to a flare. You can check the UV level on most weather apps and there are specific uv rating ones available as well. If you are generally feeling awful, having other symptoms of a flare and it lasts more than a few days then you should really contact your rheumatologist. They can run bloods and see what's going on as treating a flare early on is really important.
If you are now feeling okay, have no other symptoms or the rash hasn't lasted more than a few days then it may not be a photosensitive reaction. Many of us with lupus have a few things going on with our skin (due to the underlying immune issues and treatments) so it can sometimes be quite hard to distinguish and pick apart to start with. For example I have steroid induced rosacea, which looks identical to the malar rash to the untrained eye but reacts to heat, over exersion and alcohol instead of UV, and goes away much faster. I also have photosensitive migraines which often cause a burning sensation on my face, blurred vision and a headache.
Some others have medication induced flushing and mild rashes which react to UV light. Heat and UV can also cause mild dehydration which for many of us creates a mild butterfly rash appearance and exhaustion.
Sorry for the long comment but wanted to try and explain how difficult it can be to pick apart. Over time though you will learn to know which rash means what, and how to react.
Oh my gosh! It is indeed difficult to pull apart. I'm just getting used to this new symptom- diagnosed by the dermatologist but apart from saying to take great care re sun protection she has passed me back to rhuematology.
Certainly, the 'depth' colour etc of the rash does appear to correlate to how long I've been outside. The day it first started I had been out for about 30-40 mins on a cloudy day with the dog- obviously no protection because I had not shown any symptoms of photosensitivity - that evening bright red malar rash. They tend to go after 24 hours at present but I do feel the UV reaction is getting stronger as the impact of being out does feel more systemic, tired, headachy, yuk (very medical term) with the rash the visible sign coming out later -if that makes sense.
Much to think about and certainly some questions for the Rhuemy when I get to speak to them.
I am so sorry that such a lovely trip for your 21st ended up causing such havoc- perhaps Greenland next time! I used to love walking hols with my other half. Needless to say, they will have to take a different form in the future.
Thank you for such a detailed and caring response. You have added to my knowledge and given me more to chew upon.
No problem at all. I'm glad I could offer some advice and give you at least a starting point. Lasting less rhan 24 hours is a good sign so fingers crossed. Definitely focus on your sun protection for now, and write a list of any questions for when you next see your consultant(s). It's all a learning curve and you will work it out as you go.
On the holiday issue, please do not worry. We live and learn. I'm 27 now and have been abroad to hot countries every year since (obviously not 2020), safely, and without any long term effects. You do have to adapt some things to aid your condition, but that's not to say that you won't have plenty more walking holidays in your future.
So when I was diagnosed was told that any sun, no matter how strong will make an effect. The way I explain to others is our skin is like solar panels.... it absorbs the light which then switches on LUPUS reactions. In my case it is joint pain, fatigue and rash. I live in Scotland, and the consultant, who was lovely said to me always beware of those days which you nip out and don’t protect yourself. Even in summer I cover up and in winter my face always gets a layer of protection. I have skin protection in the kitchen, in the car. Just remember to Slip slap slop as the Ozzie’s say 🥰
Oh Thank you. Yes, it is those little unguarded moments that seem to be my downfall. Good description of the solar panels - makes sense. Not sure that I have Lupus, am in the period of being diagnosed (welll, it's a year) Have collected descriptions as the time goes by, from Inflammatory arthritis, Sicca symptoms, UCTD, photosensitivity and now malar rash, ANA+ve. Waiting for some more test results. Meanwhile am looking at the Sunsibility website. Feeling deflated as went out with dog at 5.00 pm, all covered just for 30 mins - bingo that evening... malar rash and felt drained. We might be like solar panels but as soon as we are charged up it's like we are attached to the national grid. xx
Yes, sadly I did! Is this how it happens? Just so not used to it!!
I've just spoken to the lovely lady at sunsibility and wondering if my old 50F has had it's day. It has been much abused. I think I'm going to buy a new one and an umbrella with 50F in it. x
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