Our ‘Topic of the Month’ in June will be, ‘Coping with Light Sensitivity'
The hotter weather and longer days are now with us again, so it seems like a good time to discuss light sensitivity so that people with lupus can limit their exposure and hopefully reduce the frequency and severity of flares.
We’d really love to hear if you have any tips for coping with light sensitivity. Can you recommend a particularly good sunscreen? Have you used a certain product to help protect you from UV exposure? Perhaps you have some good tips for making adjustments in your home or workplace to avoid exposure to UV from artificial lighting.
We would like to hear all of your tips and experiences and we’ll compile them at the end of the month for an article. Please share in the comments section below, or email paul@lupusuk.org.uk
The article itself will be posted on the LUPUS UK Blog at lupusuk.org.uk/category/blog/
All submissions will be anonymised.
Written by
Paul_Howard
Partner
To view profiles and participate in discussions please or .
I love being outside in the summer! I also pay for it by being in the the sun!
Here in the the U.S. I can get Baby sunscreen of 70 + SPF, before I go out I am pretty much saturated with sunscreen. It helps but, does not compleatly Prevent joint pain, rashes/blisters, etc.
In ordere to do the things I enjoy, I have to give and take, but, I will not stop living and, I will not stop doing the things I enjoy. Life is not over, and life is to short. I have learned to adapt and over come.
I wear shorts and a T-shirt, and that is all during the summer, and here in the southeastern U. S. I can wear shorts for about 10 months out of the year. (I can't wear shoes anyway and haven't for 2 years now).
It is copper tone high performance ,sport sun screen, sweat proof it is SPF 100
It is hard to find at times. I order it on line, I usually get 3 bottles at a time. When I get down to 1 bottle I start looking to find and order again. Most of the time I get it from amazon.com .
Totally agree with you Tiras. I am the same - love summer and the sun. I use 50+ Invisible Zinc slathered over any exposed parts and a hat. But I also found in an outdoor camping store with amazing High Tech Shirts which are made out of unusually silky fabric that offer a 50+UV protection from light. They are cleaverly designed and dont sweat either.They sell them through kathmandu.co.nz - special high tech range is called "Living the Dream" haha!! but am sure other hiking stores will have them too. They have a curved additional piece on the cuffs too to cover the back of your hand. Tailored vents in the back and front which you can't see. Just looks like a beautiful long sleeved shirt. Costs extra but worth it. Keeps your body at an even temperature and no need for sunscreen on the parts it covers. Probably designed for mountain climbers and sailors with UV issues.
Hope this helps Paul and the others too. Just an alternative and very effective solution.
Sometimes I need to wear sunglasses even on a cloudy day . Feel sort of silly, but i need it. They are Ray Bans polarized. I dont squint and strain with them. Although i wish they would wrap around the peripheral vision. I also wear hats most of the time. And i sit under a tree. I will bike or walk in the early morning or evening. I am usually not out in the heat of the day. I have a terrible intolerance for heat. I almost feel like throwing up. I have accepted that its ok to not be out during high noon. its ok.
I do have very bright Led lights at work i dont like, but have not found a solution for that as they are high overhead.
Thank you for sharing your experiences and tips Natura. I'm sorry to hear that you haven't found a solution for your lights at work yet. There are some product details on our website here - lupusuk.org.uk/eclipse/prod... There are film filters for flourescent tube lighting, but I'm not sure about LED lighting. Are your employers aware that you have difficulty with them?
I am not sure they are bothering me too much. They are bright, but the ceilings are high. Today my eyes were stinging all day, and now i have squigly lines in both eyes..hmm...
I'm well acclimatised to lupus and sunshine having been diagnosed since 2006ish! I have just been medically retired at 52 as the SLE was winning, but at work Health and Safety found light filter solutions through Eclipse support group. Filters are a reasonable adjustment in terms of Health and Safety legislation for people with disabilities. I use Uvistat sunscreen which I get from my GP. I wear a hat that is treated to SPF 50 from an Australian company Wallaroo which you can get on Amazon. I try and do outdoor things early or late in the day. I have bought a SPF 50 tent for the beach so that if we have visitors I don't have to miss out. This was from a firm called Yello but there are lots on Amazon, or the Seaside Company. I also have a long sleeved shirt that is SPF 50 (Wallaroo) for very strong sunlight that can't be avoided. As a young person I was diagnosed with "sun poisoning". After my lupus diagnosis it became apparent that many things including this will have been undiagnosed SLE. Forgetting any of the above is too costly. Mindfulness re UV at all times, and life stays manageable. Life's different with lupus.
Thank you for sharing these excellent tips lupie46 . There are a few products there that I haven't heard of before so I will have to take a look at those. I like the sound of the SPF 50 tent.
Light sensitivity is a real problem for me. I wear sunscreen(boots own 50+ never got around to asking GP for higher spf cream) in the house and sit in the darkest corner whenever I can. I wear a hat when I do have to venture outdoors during the summer months. Iv worn sunglasses indoors and I'm considering getting window filtration films. Can't afford too much at the moment though. When the sun is piercingly bright I retreat to my bedroom and close the curtains.
Iv used a beach tent with spf 50+ but last years holiday to North Wales has put me off venturing anywhere far again. The heat and light knocks me about far too much and takes me weeks to recover. As I have a few other autoimmune diseases it's now trying to keep a balance of it all. However, I love the seaside and would love to be able to go.
I did a tinsel and Turkey 4 day holiday last December and doing another this December. Someone else is driving and if I want, I can stay indoors all the time.
I did phone one of the largest travel agencies to see if they do son et lumieres type holidays (just trips out in the evening) and they said not enough call for them. I did think it was a goer, but apparently not!
I would love to do my garden, take the grandkids to the park, go on holidays, go to a pub and sit in the evening sun. Not to be. And sadly it looks like my youngest granddaughter aged 9 is the same. No diagnosis yet but she can't take more than 10-15 mins sun in a day without being ill.
Thank you for sharing your experiences. I am sorry to hear that you have such a severe sensitivity to light. I hope you have lovely tinsel and turkey holiday this year.
I'm sorry to hear about your granddaughter. Does she have any other symptoms that are of concern?
Hi Paul, yes she does. Diagnoses for costochondritis and reynauds so far. Just last week her GP agreed to refer her to a Children's Hospital as we think she also has lupus. I ended up taking her to school this morning as she was complaining of stiff leg joint/muscle. We suspected we'd get a call to come and pick her up again but she seems to have coped with it.
Thank you Paul. It seems so easy to get some treatments Yet it seems anything that's different to the "norm" and they just stick their collective heads in the sand. It's been a struggle to get this far in nearly 12 months, and still haven't got a date for her to see consultant !
(Hope links are allowed) Sorry if this has been shared before! I am newly diagnosed. tesco.com/direct/rit-dye-su.... You add it to your laundry and it gives uv protection :)... If I wear black clothing in the sun my skin still suffers. I also came across uv protection glasses that look like regular glasses, no tint which is ideal for me as I don't need a prescription lens and been told by Doctor to protect myself even in winter. I live in Glasgow so I was worried about wearing tinted glasses in the rain later in the year.
ebay.co.uk/itm/UV-Ray-prote... I have only spotted two styles so far but they're unisex, hope this helps, I am on a mission haha, this forum is thee best!
I am a black african (but am light skinned) before my diagnosis in 2011, i always thought that sunscreen was only for white people. But since 2013 summer things changed. It started with my leg, i has a shoe which had a stap in d ankle while the top bit of the shoe was open. I started noticing that d open bit got darker and my face, any open part of my body was burned . My consultate asked me to get sun i used nivea 50+. I have since got a hat, sunshades and i wear gloved even in summer. This year has been different, My son likes me to seat in d front garden and watch him while he plays football or rides his scooter. So just seating even under d shade feels horrible. At d end of the my knees and ankles are swollen, painful, red and very warm. Am haveing lumps some painful and some not in different parts of my body. My entire body is engulfed in pain just becos i am seating outside watching my son play. My gp said they are soft tissue inflammtion. It feels horrible, i apply my sunscreen b4 stepping out the door, i wear my hat, sunglass and glove. When people see me with gloves in summer they always ask me if am i cold and i say yes. I will go online and see if i can find spf 70+. A good day out for me, ends up being a pain day in on the next day. Take care and God bless
This heat which we have had for past few days seems to wipe me out increased lethargy fatigue joint pain. I try and hide from the sun as much as possible, wear a hat sunglasses keep myself covered plenty of rest and factor 50+ sun sense ultra broad spectrum UVA and UVB sunscreen prescribed by GP. Take plenty of fluids and put my eye drops in regular to prevent them drying. Previously I have taken cruises for holidays ideal really! As you have your room to hand if you need to rest, can eat when and where you wish even in your room, plenty to do when the sun is at its strongest and you can be as active or as restful as your condition dictates, you can get some great deals with the cruise Lines and there is a medical facility on board. However I will be glad to see autumn arrive.
I use Sunsence ultra 50plus. As the sun makes me rash up instantly, I wear the sun protection clothing, also baseball cap to keep Sun of face. Works for me, in saying that we don't get a lot sunshine on the East Coast of Scotland,more weather beaten .😋
When it's not even sunny if I'm outside talking to someone I have to look away because my eyes start to hurt . It leads time starting to squint . I feel so rude when in conversations and have to look away . I feel if others think I have loss interest in what they are saying
Hi LouLamb . tee8077 shared some advice about UV protective glasses in a comment above. It may be worth looking at those and seeing if they may help with this issue?
You don't have to have prescription lenses in them. It isn't any different from wearing sunspecs - what's up with going for the cool look? I wear sunglasses as soon as there is any glare at all.
Hi I was diagnosed last year with SLE and I am light sensitive, even in the car I have to cover up. I have had great support from my GP and I get Sun Sense (Australian sunscreen 50+ on prescription) I really like it as it is light easy to apply and not perfumed. I hate hats and wearing them makes me hot and itch my scalp so I did some research on line and now have two parasols that reflect UV rays up to 50+ which means I can keep cool. Yes I get comments but so what I keep safer. Where I do struggle is with heat not just UV rays, I feel really ill and my joints get worse and pain increases when it gets over 18 degrees. Luckily I live west coast Scotland so this heat is not often. I have looked at UV reflective clothing but it is so expensive.
Thank you so much for sharing your experiences and tips. I like your tip about the UV parasols if people find wearing hats uncomfortable.
You may want to look at tee8077 's comment above. They mention a powder you can use in your laundry which gives your clothes UV protection - it may be less expensive that UV protective clothing.
Always wear sunglasses when out and about especially if it is a bright day. Ensure your sunscreen has......I may be wrong here I believe it is titanium? I have to keep out of our sun even though in NZ we are a country of people that love the outdoors. That's something I have found most difficult to do over the years, however, if I want to escape one I tend to just keep out of it. Please do not expose your body to direct sun light if possible, if you have little options then cover up. Good luck.
Thank you for sharing your tips steven69 . Do you have a special type of sunglasses, or just normal ones? Suncreens with titanium dioxide do general provide broad spectrum protection against UVA and UVB.
Thank you, Paul! Well, yes. Are we Lupus patients more likely to get HPV?, does our treatment can make us more vulnerable?, as no cure for HPV and people depend on their inmune system to keep it under control does this mean that for Lupus patients is lottery what it can happen?, and if your non-Lupus partner has it but you, Lupus patient doesn't have it, is there anything you can do or just accept the fact that you will get the virus if you are together and just cope with it? What's it been for people with Lupus to get HPV?
Unfortunately this is an area that is still quite light on evidence and there is more research needed. I will do my best to answer your questions as fully as possible though;
Are lupus patients more likely to get HPV? Does the treatment make you more vulnerable?
There has been a study looking at whether people with lupus are more likely to get HPV. The findings suggested that women with lupus are at increased risk for acquiring HPV infection if they had three or more lifetime sexual partners. Increased risk for HPV infection is also associated with younger age at first sexual intercourse, past treatment with cyclophosphamide, and current treatment with leflunomide.
Potential risk for HPV infection in women with lupus taking immunosuppressants needs to be further studied. This study could not identify what doses of cyclophosphamide (or other immunosuppressants) are associated with increased risk for HPV infection in women with lupus. lupus.org/research-news/ent...
As there is no cure for HPV and people depend on their immune system to keep it under control, what does this mean that for lupus patients?
Females with lupus, and others who are immunosuppressed, have a harder time getting rid of HPV, this increases their risk of abnormal Pap smears, and eventually, their risk of developing cervical cancer. (lupusnewstoday.com/2016/06/... It is recommended that women with lupus have more regular cervical smears as a measure of preventing cervical cancer and related disease. You can read more about the treatment of cervical warts which can be caused by HPV here - nhs.uk/Conditions/Genital_w...
If your partner has it but you (a lupus patient) don't have it, is there anything you can do to prevent catching it?
Condoms
Using a condom during sex can help to prevent an HPV infection. However, condoms don’t offer complete protection. HPV can be present all over the area around your genitals and anus, and is spread through skin-to-skin contact of the genital area – not just penetrative sex.
If you've been treated for genital warts, you should use a condom for three to six months after your treatment finishes. This may reduce the risk of passing the virus on to your partner if they haven't already been exposed.
HPV Vaccine
All girls aged 12-13 are offered a vaccination against HPV to help protect them against types of HPV that can cause cervical cancer. The vaccination also helps to protect against the more common types of HPV that cause genital warts.
If you haven't had the vaccine, you can request it from your doctor. If you are over 18 it will no longer be offered by the NHS. Girls who have the HPV vaccination after the age of 15 will need three doses as the response to two doses is not so good in older girls. If a girl’s lupus is very active or if she is on immunosuppressive therapy such as corticosteroids, the body may not produce a vigorous enough immune response to HPV vaccine injections. This could make the vaccine less effective, though no less safe. For that reason, it is best whenever possible to give the HPV vaccine while a person with lupus is taking low doses of corticosteroids or other immunosuppressant treatment.
As for other people's experiences of having lupus and getting HPV, you may wish to ask this as a new question to the community to see if anybody is able to share with you?
Thank you so much, Paul! For your time, appreciated information and advice. It's been very helpful as it's not that easy to find answers, and more research is needed. Take care!
I will be presenting the results of the filled in surveys I have received to this date to my team this week and hope to receive enough interest that I might get some financial support from my work place to take this further.
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.
I wish you could write/post an article about Lupus and HPV., There's so much lack of information about it. 
