Thank you to everyone who contributes to the forum, as l have recently been diagnosed l am finding it really helpful.
l am trying to get to grips with the sunlight triggering factor. UVA cannot get through glass, l believe so if I sit in a conservatory is that ok? Re clothing, there is specialist clothing, although quite expensive, but if clothing is not see through, is normal clothing ok?
I think sunlight might be a factor for me, interestingly l have never liked being in the sun and this first flare came after a long walk in the sun without a hat.
Any advice much appreciated.
Written by
Cowsaresweet
To view profiles and participate in discussions please or .
Hi.its not just UVA but UVB too.glass doesn't stop UVA only UVB. windscreens block UVA but sunroofs and side windows don't .light bulbs also omit UV light especially fluorescent tubes so windows and light bulbs arnt good.normal clothing gives 5% protection I believe so wear factor 50+ under clothing .Wear factor 50,a factor 50 hat and sunglasses all year even on cloudy days as uv levels can still be high.cover up head to toe as sun on any part of the skin will trigger rashes in your usual place .stay in the shade or indoors as much as possible.x
SML has said most of what Il was going to say - I'll just add that darker and denser weave fabrics are more protective than thin ones but are not perfect
Hi Cowsaresweet, I can’t add to any practical advice as fellow posters have already been really thorough with their help (as usual for this great forum!) however I understand your pain.I’ve had heatstroke/sunstroke more times than I can count, sun exposure leading to 3 day migraines, weakness and pain and it’s absolutely horrible. I love nice weather but now when someone mentions plans to me that involve being outside I don’t look forward to them at all. All I can suggest is covering up (hat, sunnies, sun cream) seeking regular shade, plenty of hydration throughout the day. Hope you’re alright
The best natural fabrics for keeping the sun off are wool and silk. I think artificial silk is ok too. It's not foolproof - but better than linen or cotton. Other than that I suggest layers and a Tilley hat - they've just started making some amazing colours so as soon as I can afford I'll be treating myself to a new hat!
I'm photosensitive too..all good tips so far.I will add that I have to be very careful with windows...there is a UV protective film that u can buy. I have my windows covered so that I can sit in shade at home. It's slightly tinted so I can still see the garden..kinda like wearing mild sunglasses.
Also be very careful around water!! It reflects UV rays upwards..so u can feel extra poorly near rivers, lakes etc...and the other UV reflecting surface is snow believe or not!!
Fluorescent indoor lighting n strip lighting in hospitals, supermarkets make me feel rough so I have to wear a wide rimmed hat both indoors n out.
If u look on lupus UK website n scroll down to Eclipse there's lots of info about light sensitivity.
One more thing before I go is beware of computer screens n phones, iPads etc. I have to turn the brilliance down on these gadgets too. 🌈😽😽Xx
As others have pointed out uva does get through glass, I discovered that the hard way (in winter). I hope between all the replies you will find a way forward to stop the light affecting you - I'll put my experience below
I can't go out in daylight without fully covering up and have discovered that it is not just uv but levels of brightness and blue light - so this includes some indoor places (supermarkets!). I first discovered my photosensitivity in a dark January even covering up, eventually (after started taking hydroxychloroquine?) it isn't so bad that I have to stay indoors, but I have to cover up. I was able to go uncovered in winter early a.m and late p.m when 0-1 UV but for the last 2 years I've needed to be covered even in the hour around sunset & sunrise, yet my reaction to brighter part of the day isn't quite so ferocious...weird.
Bamboo fibre says it protects against uv so I use long sleeve base layers & hoodies from BAM with walking trousers or indigo thick jeans. For summer I have a cotton (very tightly woven and hard to get pins in) used by hat makers that my parents have made into long dresses, shirts and scarves for me and I die them indigo (because yes dark colours are more protective but I think optical whiteners can help with paler fabrics). Worth looking at outdoor clothing eg Craghoppers who have uv protection clothing often called "solarshield". Men's shirts are good because can get them big) I have trousers (including a very lightweight pair) and shirts. A lot of the specialist stuff is expensive and very polyester-y
I wear Bolle wrap round workwear glasses that protect against blue light and uv. my face and head is covered by UV protection "Buffs" (in days gone by probably would have called them snoods) or the cotton scarves and I have big umbrellas for sunniest part of day - silver on top black underneath; in winter I can sometimes just wear Buffs, glasses and hoody up, maybe a baseball cap. When it is very windy and even my anti-wind umbrella can't stand it, I "triple Buff" and wear Bolle glasses that are very dark, or (still wearing glasses and lower face cover) use my very big hat tied down with scarf of hoody - but can't see very much then! I also use the hat for quick trips outside - it has the uv protection cotton in it and wire to hold its shape.
I love the sea and swimming and wear UV protection rash vest and leggings under a very fetching hooded uv protection burkini! With additional head and face cover via Buffs and the dark glasses. I have sewn a plastic face mask support inside a Buff as if it gets wet I can't breathe! (pandemic has been useful for something)
Now that there are so many light bulb possibilities I have worked out what indoor lighting I can use via lumens and degrees kelvin. My parents have lighting that is too blue for me so I tend not to go sleeveless indoor - my laptop table is by glazed doors that go into a room that is bit like a conservatory, so I feel like I have a view outside and can enjoy bright sunny days even though I'm in a darker situation. When I go to places I can now usually tell if the lighting is too bright or blue and will wear baseball cap indoors and maybe scarf over part of face. My reading/computer glasses have uv & blue filter.
I'm glad to read that the forum has been of great help to you.
Many people with lupus experience a flare of their symptoms when exposed to sunlight. The most common symptom is for rashes to appear on the skin, affecting areas that are frequently exposed such as the face, neck, hands and feet. Sensitivity to light can also cause lupus patients to develop a migraine, experience nausea or joint pains; joints can become tender to the touch and swollen.
In general, if you can't see your hand through clothing when holding it, it means it is a little better at protecting your skin from UV/sunlight than thinner fabrics. However, it is recommended that you wear SPF 50+ sunscreen every day even on cloudy/rainy days. Sunscreen is available on prescription for people with lupus, you can ask your doctor to prescribe it for you.
To learn tips and information about how to cope with light sensitivity read our blog article at lupusuk.org.uk/coping-with-...
Dear allThank you so much for all of this kind advice and information.
Using the above and the resources mentioned I created a key point list which I will share here in case they are of any use to one else.
UV
• There are three categories of wavelengths of ultraviolet light: UVA, UVB, and UVC. While UVC is blocked by the ozone layer, UVB is primarily responsible for sunburns and the photosensitivity reaction that lupus patients experience
• 40% to 70% with Lupus find that they are made worse by exposure to UV rays from sunlight or artificial light.
• UVB wavelengths peak between 11am-3pm
• Sun-damage happens in everybody's skin, normally most of these dead cells will be efficiently recycled. In lupus patients, the fragmented apoptotic cells are not cleared away effectively leaving the cell’s proteins vulnerable. The body’s immune system may decide to attack these vulnerable proteins (Ro and DNA) triggering the production of antibodies, this is called autoimmunity. The antibodies generated by sun-exposure circulate in the blood and can travel through different organs. Damaged cells containing fragments of DNA and Ro proteins reach through the body, such as the joints, which then are susceptible to attack from these antibodies and set up inflammation there.
Light bulbs
• These can emit UV
• Choose light bulbs that have the lowest possible irradiance (intensity).
• Cover fluorescent and halogen bulbs with light shields or glass that filters out UV rays.
Glass and windscreens
• Typically car, home, and office windows block most UVB rays but a smaller portion of UVA rays
• Windscreens block UVA but sunroofs and side windows generally don't
• UV radiation that comes through windows probably doesn’t pose a great risk to most people unless they spend long periods of time close to a window that gets direct sunlight.
Clothing
• ‘Normal’ clothing can give as low as 5% protection. Dark colours generally provide more protection than light colours. A tightly woven fabric protects better than loosely woven clothing. Dry fabric is generally more protective than wet fabric.
• Most ‘sun protected’ fabrics are UPF 50 +, so better than your typical SPF sunscreen
• The UV protection factor (UPF) value is the level of protection the garment provides from the sun’s UV rays, on a scale from 15 to 50+. Higher UPF = higher protection
• Some outdoor gear e.g. walking trousers has a UPF rating
Sunscreen
• Sunscreen does not block all UV rays, use high factor.
• Sunscreen should not be used as a way to prolong your time in the sun. Even with proper sunscreen use, some UV rays still get through. Because of this, sunscreen should not be thought of as your first line of defence.
• For example, when applying an SPF 30 sunscreen correctly, you get the equivalent of 1 minute of UVB rays for each 30 minutes you spend in the sun. So, 1 hour in the sun wearing SPF 30 sunscreen is the same as spending 2 minutes totally unprotected.
Makes you look at the weather forecast in a different light I now feel pleased when it is going to be overcast😅
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
