I am highly photosensitive, and while I know that blue light as well as sunlight can trigger flares for us lupies, I don't really understand why or what exactly I should be doing about it. I'm hoping someone clever on here might be able to point me in the right direction.
From what I understand, there are different types of blue light - there is a circadian alerting blue light and a high frequency blue light. I THINK there is also high energy blue light, which isn't the same as the whole spectrum light - but high energy and high frequency may be the same thing, I'm not sure. If circadian altering blue light is the sort of light that affects our melatonin production and therefore our sleep patterns, is this also the type of blue light that can trigger our lupus to flare?
I've been told that if you can see the color blue you can see circadian alerting light because the receptors that set your body clock are non-visual but the alerting wavelengths are all visible. So if I can see blue, does that mean that the light is potentially causing me an issue? Even if it's not from an artificial source? Does ALL blue light cause us an issue?
I'm so confused! Any guidance would be hugely appreciated!
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Lucy74
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So glad you have put in this post. I too find it extremely complex and would love someone with some knowledge to explain it to us. I know I am very bad with some led lights , we had to change the Christmas tree lights as they gave me a horrific flare.
With sunlight I find that clear blue sky and bright low light in the winter is dynamite. It looks so beautiful and is so clear so I wonder if more harmful Rays are getting through. I took the dog a fifteen minute walk along the beach in that clear sun a month ago and came home with huge red stripes and weals all over my face. I had to increase the steroid to get rid of it!
We were recently at a family wedding and I was terrified of coming out in massive red blotches in all the photos as I was mother of groom, but there had been a thick sea mist in the morning that burnt off to a golden mellow hazy sun by afternoon, and that caused no bother at all, thank goodness. I am also much worse on sunny snowy days, more reflexion I expect.
I wonder if different parts of the world are worse, such as Alaska or Norway being colder and clearer, not that I will likely ever get there!! Though I would love to go to Iceland.
I don't know much about this but there's a wonderful photosensitivity clinic at nine wells hospital in Dundee. They diagnosed the cause of my photo sensitivity through a week long series of tests. I understand its the only such unit in the uk. Very impressive. My problem was perfume in all skin products
That is really interesting Cathie. I am dreadful with most perfumes too and combination with skin care products would definitely make it worse.
Will check out the skin centre in Dundee. I am in Ayrshire but I wonder if there might be a similar clinic in Glasgow? It really makes you scared to go out at all some days.
I wasn't aware that different colours of light could cause our SLE to flare,I thought it was just UV light. However, interestingly I had been having problems with oncoming headlights when driving in the dark & consulted Ian Jordan of Jordan's Eyes in Ayr who specialises in how colour affects us. He prescribed me blue blocking glasses which work a treat for my night driving & I'm now wondering if they might be benefiting me in other ways!
What a fascinating concept - I hadn't heard of this. I'm geeking out about it already, I'll definitely do some research into it. But it would answer some questions I've had as, to my knowledge (which may be out of date), UV light is considered somewhat worse during even cloudy conditions, yet I find I can work under cloud cover outside even at high noon with no ill effects. On sunny days, I don't go out during the summer between 10-2 to work in my garden. I used to react a lot worse to the sun than now, however - I'd be sporting 'sunburn' in February and had no idea why.
I'll definitely look into it, but the best advice I have is lots of 50+ sunblock, sunglasses and a hat. No exceptions!
Cathie, I've been to the clinic at Ninewells, a few years ago now. Unfortunately, my experience was less than 'wonderful'!
They diagnosed me with UV sensitivity, being particularly bad with UVA. The skin reactions they were getting from me were so clear that they took photos of me for their materials. So I have my three minutes of fame in a medical textbook somewhere, haha!
However, at no point did they tell me that light from fluorescent lightbulbs and long life lightbulbs light is actually UV light. It's my own stupidity really, but I just thought it was a different sort of light. Their advice to me was basically stay out the sun, use sunscreen, wear dark clothes if it's sunny. If they had said to me that at some point, if my sensitivity got any worse, that I might want to be cautious about inside light, then I wouldn't have got as ill as I have been recently as I would have made the connection sooner. The photosensitivity has got much worse recently, but I have only just worked out that the inside lights have been causing me an issue, and only just learned that blue light from screens can be bad for lupies too. It was one of the admin on here, Paul, who confirmed that about the blue light. I'd only found out about it because I read an article about the impact of blue light on sleep, and wondered from there.
I'm actually really angry with Ninewells and other supposed specialists. I've been to Ninewells, I've been at the photosensitivity unit at the Western in Glasgow, and I've seen a couple of different Rheumatologists. All of these people knew I was highly photosensitive, and not one of them mentioned that I might be sensitive to inside light.
The doc at Ninewells, Alasdair something or other, said to me, when I asked him a question, 'oh, it's quite complicated, I don't know how I could possibly explain it to you'. How patronising. It's no wonder we struggle to find the information on this - even the specialists won't bother taking the time to explain it. If someone would take the time to explain it clearly, I'm pretty sure I'm not too stupid to understand it.
Mrs Newfy - interesting. I've also just got glasses - supposed to be for driving in the sun - but they block 100% UV and 95% of blue light, so I've been using them for PC work, tv watching and being inside when there are fluoros or long life bulbs. So that will help with the neuro reactions I hope, but I definitely need to find out more about the different types of blue light.
I'm glad other people are interested too, it's not me just going a step too far! I do think maybe we've been missing a trick here, and if we get the information, it could really help us.
St John's institution now at guys hospital london.Dr sarknay,is top UK specialist dermatologist saw me knew my condition in 10 minutes. Had photosensitive tests..mine negative but still photosensitive. Did allergy skin tests normal or discarded as had heat rash reaction to flourscent light test.
Not under them.now buy he is excellent.
I use factor 50 sun sense changed indoor light bulbs back to old type.shade in flourscent lights does diffuse it for while but still not advised be under them to long.
Wide brim.hat sunglasses that wrap round in summer all help.
Blue light you mentioned us worst it is type used in sunbeds some flourscent lights.
Halogen is not blue but gives off a lot if heat again.not advised.
Filters for pc screen can be bought online.
Also sun threw car or home windows intensively magnification if sun.light causing me to react.hope helps
I am assuming you are refering to Discoid Lupus? Lupus flares when it wants to. I have SLE and I am in the sun just about every day. I find that the fatigue comes on whether I am in the sun or if it's raining, I am home. Perhaps Discoid is different. I don't know. All I know is that people who take Plaquinel are usually much healthier and have more energy than those of us with SLE.
Maybe that's why I am always sick. I didn't realize that light affects Lupus. What I don't understand is why so many of my nutrients fell below normal along with my patelets: iron, sodium, chloride, carbon dioxide and albumin. Never happened before.
I only know one person who takes Plaquinel and I read up on side effects. It can affect the eyes. So does Spiriva, that I must use every day. One eye doctor warned me abotu cataracts from using Spiriva. Essentially, he was giving me a choice between breathing and cataracts. I chose the breathing. Subsequently, I did need cataract surgery, and also, laser afterwards. My eyes are still not good at all. I'll be back at the eye surgeon on Thursday. I thought Plaquinel was prescribed only for Discoid Lupus?? Every rheumy I saw wanted to put me on steroids. I declined that. I have, over the last 4 years, developed more medical problems that would take up this entire column - the latest being all of my "essentail nutrients" are now low - i.e., iron, calcium, sodium, etc. etc. I'm wondering -- is it my kidneys? My hematologist kept connecting a lot of my abnormal labs to dehydration - a term he loves to use. So I drank more. And all of the nutrients I need were depleted. Now what???? Can't take vitamins - I'm on Coumadin for DVT's twice. I do take magnesium - and he forgot to check that. The results for that should be in tomorrow. And then ...? Your guess is as good as mine! His lab tech told me to eat a "banana with salt." Sounds yummy eh? NOT!!! She explained that potassium helps keep your sodium up. what surprises me most is that we were on a cruise and everything was salty! I had the labs two days after we returned and my sodium was LOW. I'd love to hear any input on that!
Plaquinel is Hydroxychloroquine which is often one of the first go to meds with patients with SLE. I don't know much about Discoid Lupus but my understanding is that patients with Discoid Lupus only get skin involvement,not the multiple organ & joint involvement of SLE.
You are right. All they ever talked about with me was steroids. I once gave in and took a massive dose. It helped and then 4 weeks later, right back to where I was. It caused awful stomach pain. It was like putting a band aid on surgery! I once asked a rheumy about Plaquinel - his answer was "It MAY work." The way he said it, I could tell he was fishing for a needle in a haystack.
Very interesting topic, as I am confused by the lighting. also.I never realky seemed to have a problem with it until just now, this spring.I decided after a long cold Ohio winter to sit out in some beautiful sunshine, and my arms which were basically the only thing exposed, broke out into these red bumpy itchy circular welts, that I am having a hard time getting rid of.The tissue underneath these areas hurts and the joints closest to the areas ache much more.I am glad I had had a hat on!
Starbright if you do a search on here then you will find a LOT of information about sensitivity to sunlight - you might find something that will help you understand more about it or some advice. Sensitivity to sunlight is really very common, and a lot of us find that while it causes the obvious skin issues, it also can trigger a flare or other symptoms that would seemingly be unrelated.
This post is more about the blue light - which seems to be not as much of an issue, or perhaps just not as widely known about.
I had never heard or read anything on blue light. I wear sunscreen everyday, all day. Summer, winter, in between. I've driven a highway from Gary to Ann Arbor pretty often. I've also been a passenger. The car window does something to increase the intensity of the light. I had my windows tinted in one car but the next time I tried, I was told it was illegal. The sun roofs set off splotches with handfuls of hair coming out. I also know that sun on snow, sun on clear water, sun on sand is particularly bad. It must be the reflection that makes it stronger. If I ever get a prickly feeling in my head when I'm under a fluorescent light, I put on a head scarf. I've not had any problems with the computer. I guess I had better thank my lucky stars that my photosensitivity isn't "too bad". It feels as though I have had to do a lot of accommodating to manage without too many ill effects. The current rheumy doesn't address photosensitivity. He has maintained "that is something else". The other thing I have is I wake up some mornings with a "scratch" coming out from the side of my mouth to middle of my left cheek. I haven't scratched it and it is always in exactly the same place. These comments on blue light are really interesting. It seems like I get more useful information here than in the doctor's office.
Fighting you are not alone, I have those weird scratches on just one cheek some mornings when I am in a flare. It is never on the side I lie on either, just big white lines surrounded by red risen areas. It gradually stays for most of the day then fades to just some odd lines on my cheek. Helps to know I am not unique after all!! C x
This is a very complicated area for which I have limited technical knowledge but I will do my best to be of assistance.
Light that is blue to ultraviolet have shorter wavelengths and are higher energy that light of other wavelengths. The higher the energy of the light, the more potential damage it can have on cells in the body and the more likely it is to trigger a lupus flare.
Different types of artificial lighting produce light of different spectrums. Icandescent light bulbs for example, produce light with fewer short wavelengths than the newer flourescent lightbulbs. You can learn more about the different types of bulbs and their effects on people with lupus on our Eclipse website here - eclipse.lupusuk.org.uk/guid...
If light is visibly blue then it will likely have a spectrum which favours the shorter, blue wavelengths and as a result is more likely to be damaging. However, the extent to which people with lupus are sensitive to light varies greatly, so they may not be harmful for everybody.
If you suspect that they may be triggering your lupus there are some practical aids available to help filter the light. You can learn more about these at eclipse.lupusuk.org.uk/prod...
I hope this helps to clear up your confusion a bit. If you need any more help, please let me know.
I’ve just come across your post about blue light and was wondering if you could give me any advice.
I was diagnosed in September 2018 with SLE and have been off work since but am now at the point that I thought I could return. I am very light sensitive but find lights in the school I work in, shops and public places make me very fatigued and aggravate my symptoms. I have been managing really well, definitely getting symptoms under control etc but went into work for two hours on Thursday and Friday this week, since I’ve had eye pain at night, chest pain (like you I have had pericarditis and the pain is like that) and feeling more drained than I have in weeks. I’m sure it can’t be a coincidence! Yesterday I ended up wearing sunglasses inside as I could feel the lights sapping my energy and my eyes were the only part of me unprotected! I wear factor 50 all day every day, dark, tight woven clothes etc.
I’ve just been to buy new glasses with special lenses that reduce the white and blue light intensity as I want to do everything I can to help myself but am getting rather concerned that on Monday I start phased return but after two days back at work I’m feeling like I’ve taken a huge step backwards.
Sorry for the delay in replying. I hope you are getting on OK with your phased return.
I would echo the advice given above, and I have some additional experience from an office environment which might be useful.
I wear 2 sunscreens on my face every day - UltraSun SPF50 and also an Alumier SPF 40 one - I know the combination doesn't add up to 90! But they have different types of chemical and physical sunscreens in them and I've found it a good combination for me. Even with that, I still get the polymorphic light eruptions on my face if I'm in sunlight or artificial lights (shops and offices).
Like you, I bought special glasses - I got mine from Specsavers - they are the ones with the orange/brown lenses - designed for driving in sunlight, but they filter out blue light, and I've found them really helpful when looking at a PC screen or in artificial light such as offices, shops and transport. I'd be interested to hear what yours are and where you got them?
If I'm in a shop with bad lighting, or on transport such as planes, trains etc, I normally wear a hat, or when it's really bad, I have a special headscarf. Obviously that's going to attract some attention in an office environment, which I don't really want! I get my special UPF clothing from Solumbra in America. That's a bit of a pain as they don't have a European distributor so you get stung with custom tax but it's worth it if you can afford it. If you have anyone you know going on holiday to the USA, have it delivered to where they are staying, and they can bring it back for you! For outside use in summer, if I want to do anything active like hillwalking, I have found the Solumbra products to be the best by far, they have really helped me. I don't go out during the day if it's sunny at all, but that clothing has allowed me to go out later in the day/early evening when it's light.
OK, on to office life now. I no longer work in an office environment, and that has made a MASSIVE difference to my energy levels, pericarditis etc. I'm in offices quite often for meetings etc, and that really drains me, but most of the time I'm in other locations, where the lighting is kinder.
My previous employer were very good when we realised how much of an issue the office lighting was. My desk was directly under fluorescent bulbs. The Health & Safety person came with a light meter and measured the Lumens of where I was sitting and other places in the office. We checked out things like beside windows because I get the PLE even through glass (and clothes) so I can't sit beside windows.
They could have moved me desks to a darker place, but everywhere had bulbs and the bulbs were brighter where it was naturally darker, so we decided it was easier and better to just remove the bulbs above my head where my desk was. So that really helped. Probably the most helpful thing ever. Also, for the other bulbs near me, they sourced a UV filter which they placed over those bulbs. It's like a clear plastic film which just wraps round the bulbs. It doesn't affect the brightness so it doesn't have an impact on other people, but it filters out the most harmful rays for us. I think they covered all the lights within a 12 foot radius - something like that - it was about 4 years ago now so I can't really remember. They couldn't do all the meeting rooms I might be in, but at least I had that protection where I was sitting for the majority of the time. They also told me that most modern office bulbs allow you to turn down the brightness. Unfortunately where I was, it wasn't those sort of bulbs, but this might be useful to know in case your office does have the more modern bulbs.
So that all really helped. Nowadays I'm mostly fine. I do find that if I'm travelling and in an all day meeting, I can get flare ups - fatigue and pericarditis. It's definitely caused by the light exposure. Definitely - I am 100% certain of that. I often find if I've been in a meeting room all day, on my way home I start to get the stabbing heart pains - so I know I need to be in a dark place the next day. I manage this myself as much as I can, and just kinda deal with it and rest at the weekends when it's been unavoidable.
My current employer provides me with a company car, as I have a Regional role which involves a lot of driving. I'm unable to be in a car when it's sunny as the light through the glass is not only very painful and distressing, it also makes me really confused, which is dangerous when I'm driving obviously! My current employer sourced some UV film which they had fitted over every single piece of glass in the car and it makes such a massive difference. Again, there is no difference to the light quality, you can't even really see it, unless you spot the little logos at the side. So anyone else could drive the car and not even know it's there. This fiilter is so good that I feel, in summer, that my car is the safest place I could be. I hardly get any issues from it at all, unless I'm in it for hours. If I've got a long drive in the sun, I tend to have my protective headscarf and wrap on too, and that tends to help too.
I hope that's been useful information. Good luck and keep well.
Thank you so much Lucy for your really helpful reply. You have given me such hope and encouragement in the way you manage and can work.
I’m going into my third week of phased return and so far so good but my work place certainly isn’t as helpful as your work places seem to have been. My manager hasn’t made any reference to the recommendations made by occupational health so I really need to work out how to approach this in the best way.
I bought some glasses from Specsavers - the lenses are a new sort, they’d only been out for 8 weeks before I ordered them and they are fabulous. I’m afraid I don’t know the name but they take out the glare and I’ve had UV protection added. They are also suitable for wearing at night with the glare of headlights. I got them last Wednesday and can’t believe the difference with them, my eyes don’t hurt and today i accidentally wore my old glasses - I’m feeling really drained and my eyes are sore. I’ll try and find the name and I’ll let you know.
That’s really interesting about the car too, I find I get very drained in the car especially when the sun is out and when I’m not having a great day I don’t always feel confident driving as it makes me feel I’m not properly alert. I now only drive if I feel I’m up to it.
Thank you so much and I’ll try and find the name of the lenses.
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