First post

[sobeit]

l have been a member for a few years, but never had the courage to post until now. I do not have a lupus diagnoses, but cant help feeling this is what l have.

l would like to ask those of you diagnosed with UV (mine was strong positive), if you get or have had any medical support or advice. l use factor 50 daily, a hat and sunglasses but l am effected whether l am indoors or outdoors or travelling in a car,also effected by artificial lighting especially fluorescent I have applied a clear UV film to one room as an experiment, it helps but does not work as effectively has l had hoped.

If you use a window film to block UV, l would be interested to here which ones work?

Thank you for taking the time to read my post

[Paul_Howard Partner LUPUS UK]

Hi sobeit ,

It is lovely to see you posting in the community and I hope you receive lots of helpful and supportive comments. You've mentioned that you don't currently have a lupus diagnosis - do you have any other diagnoses and are you on any medications at the moment?

We have an article on our website with lots of information, advice and personal experiences relating to light sensitivity and lupus. You may wish to give it a read - lupusuk.org.uk/coping-with-...

[sobeit in reply to Paul_Howard]

Thank you so much for your reply. Yes I have read the information on the lupus site regarding light sensitivity, along with many of the other fact sheets, l was just wondering if any of your members had come up with any other helpful tips.

My diagnoses are Rheumatoid arthritis, light sensitivity, functional neurological disorder, kidney decease, osteopenia, IBS, hypothyroidism, gastritis, depression. My medication is methotrexate, hydroxychloroquine, calcium & vitamin D, folic acid, levothyroxine, omeprazole, amitriptyline, steroid nasal spray and amlodipine.

[Hidden]

Hello and welcome. I like your name! I don’t have a Lupus diagnosis either but I have Sjögren’s, Hypothyroidism and several others on your list including early chronic kidney disease, sun sensitivity and a previous diagnosis of RA.😊

[sobeit in reply to Hidden]

Thank you for the reply, l was beginning to think there was no one else suffering with sun sensitivity, how bad is yours? l am having difficulty with this, so much so that l am indoors behind blackout curtains, (even at this time of the year) it causes a flare up of my symptom's. Have you found any tips other than those on the lupus website, have you had any medical advice or help for sun sensitivity?

[Hidden in reply to sobeit]

No mine isn’t remotely as bad as yours and it mainly affects my eyes so I have to wear shades. But I do notice that being in UV worsens my fatigue symptoms. For me though it’s the cold that’s the real enemy as it makes my nerve pain in my face really bad. I have to wear a scarf around my face - I think I’m going to need a balaclava soon which will be interesting with my shades!

So maybe you need to think about UV repellent headgear and shades?

[Krazykat26]

Hi sobeit,

I was diagnosed with SCLE in 2017..I am extremely sensitive to uv rays n this affects my skin mainly..over the past year I have had continuous rashes and I'm unable to apply sunscreen because my skin gets so cracked n my hand r badly affected.

Can I ask how the uv affects u? What film have u got? U said in your post that your film is clear. I have uv film in my home n it's got a slight shade on it..it's like looking through mild sunglasses..so not much difference because I can see the colours of the flowers n plants in my garden. I got this film from a company called easylife n it's supposed to block out 80% of uv..I'm finding it is helping because I'm able to sit comfortably in my very sunny south facing living room. Lupus uks website has a link to eclipse which advise on light sensitivity n there is a company called dermaguard that fit uv film for conservatories etc. Eclipse also have good info on light bulbs to use when light sensitive.

I have a flourescent light in my kitchen that I can't use because it's too much so I've got a lamp in there now..I use led light bulbs..warm white..these are closer to infra red than ultra violet and therefore safer to use. I wear glasses n I've got the kind that change with the sunlight n they've got a treatment on the lenses to shade my eyes from flourescent light as well so I don't have to wear sunglasses. If u look at the eclipse website on lupusuk they give all kinds of useful suppliers of UV clothing, hats,parasols as well although they're out of my price range but it's worth a look to get some ideas..I now wear a black Australian bush hat n under that I wear a scarf that wraps around my neck and head so I'm completely covered..I don't have to cover my face though.

I noticed that u are on hydroxychloroquine and that can increase light sensitivity..I'm on it too. I totally understand how it is to be light sensitive n it does seem very much a case of trying to find what's right for u so it's all experimentation. I know how u feel because I have never been aware of the weather as I have to be now n I'm practically housebound spending much of my time behind closed curtains. X

[sobeit]

Thanks for the info. l used a window film that claimed to block 99%+ of UV, it helps but not as much as l expected it to. l found the information on eclipse very helpful, but in the past couple of months my toleration of UV has gotten worse. l have been on hydroxychloroquine for about 5 years, l also wear a hat similar to yours its leather and l also have to wear sun glasses and factor 50 SPF

You asked how it affects me, it sends me into what l can only describe as a flare up of symptoms, causing horrendous fatigue, pain, gastro problems, mobility issues, speech impairment, brain fog and neurological problems. Once again thank you for reply, much appreciated,