I have recently been diagnosed with SLE and am allergic to UVA and use factor 50+ sunscreen but wondered if it is necessary to buy a hat

[loulou2209]

With uv protection or will a normal straw hat be ok. Also my dermatologist had advised museum film for house windows and. Car windows. Does anyone have these and is the film noticeable. How do you know what grade to use. Thank. You.

[Wendy39]

Hello loulou2209. I have been prescribed the 50+ sun cream and told to cover with clothing that you can't see through. I have also bought a couple of hats ready for the sunnier days but I am afraid that I can't help with regard to the film cover for the windows. I have never heard of that. Hopefully someone will help out.

[loulou2209 in reply to Wendy39]

Thanks Wendy39. Did you buy ordinary hats or UV hats. Is it just material you can't see through that's ok. Also excuse my ignorance but if you wear factor 50+ why do you need to keep covered. Is it that there isn't high enough protection in 50+ cream.

[Smartcar in reply to loulou2209]

Factor 50+ is not sufficient for me, I purchase factor 110 from Amazon and this still does not completely protect me either. So yes it is very important to use a hat also. You are ignorant in thinking factor 50 will suffice everyone, I am also sensitive when indoors. My factor 100 is worn all year round as I can still have problems on a dull and cloudy day.

[farmerfester in reply to Wendy39]

Hi I'm prescribed factor 50 plus does the job modern car windows dontvallow much uv through I also have specs without protection and try to avoid the sun between 11 and 3 ish g

[farmerfester in reply to farmerfester]

Specs with protection sorry g

[flossy1]

Hi Loulou, if you go onto the Lupus UK web page you will find all the information you need on Eclipse. Hope this helps. X

[Wendy39]

I have just bought a normal sun hat - I cannot see through it. I guess if you can't see through it, then the suns rays won't penetrate it. Same for clothing. I know someone else with Lupus who is sun sensitive and they cover with clothing, long trousers, long sleeve tops and then cream on areas not covered. But I am no expert. I was only diagnosed in November 2013 and so am bracing myself for sunnier weather. I have been wearing 50+ on my face all winter. Don't be scared to ask on here, that's what it is for! Thanks Flossy1 I need to tread that too.

[Wendy39]

Read that sorry! Not tread!

[Heatheric]

I guess it depends on the extent of your reaction to the sun - we are all different and you will find what suits you best. Good luck

[Hidden]

Hi loulou2209, I have to wear a hat in fine weather. The difference between not wearing one is huge for me. I loathe wearing it, but it helps me tremendously. As to what type of hat, it's trial and error. I can wear a straw hat, it's good enough for me. Straw hats do allow your head to 'breath', but I have no knoweledge of uv hats, and they may well do the same. I bet a straw hat will be cheaper....lol....

[loulou2209]

Thank you everyone for your advice and information. I have just recently found this site and posted two questions. I am sure this will be a great lifeline for me. Thanks glossy1. I will look at Eclipse. And as you smartcar pointed out I am ignorant as I didn't know factor 110 existed so thanks for that too.

[Paul_Howard Partner LUPUS UK]

Hi Loulou2209,

As others have suggested, generally a good way to test how protective clothing is against UV is to hold it up to the light and see how much light comes through. For window films, we have some recommended suppliers listed on our Eclipse website here - eclipse.lupusuk.org.uk/

If you need any information about SLE, we have a free information pack. If you haven't had one yet, please feel free to send me a private message or email [e-mail] with your name and address and I'll pop one in the post for you.

[Wendy39]

I did a bit of "googling" on this after reading the replies and spoke to my husband. It seems most modern glass, in houses and cars block both UVA and UVB rays. But again I guess it depends how sensitive you are. For me, this will be my first summer knowing what my problem is, so hopefully with a bit of trial and error I will work it out. Oh, and haven't been called ignorant for a while, thought this was a friendly site.

[loulou2209 in reply to Wendy39]

Hi Wendy39. Thanks for your support. Was thinking the same thing as you and really can't remember being called ignorant for a while either. I have uva beads I got from dermatology so will try them in the car tomorrow. The uva does come in my house as the beads changed colour. I am also undergoing uva1 treatment as my skin was a mess last year before I knew what as wrong. I think your right that it will be a bit of trial and error for me too this year. Thanks again.

[Lupylass]

Hi there

I find hats difficult because it's always rather breezy where I live and keeping them on my head is a challenge!

I wear factor 50+ and reapply it during the day. Shops like Rohan do clothing with sun protection which I wear for walking etc as they're excellent for walking in too.

I'd start off cautiously; don't spend lots of money. See how you get on.

It's also worth remembering that sun sensitivity isn't just about how your skin reacts, but also how you are in yourself after sun exposure, and to complicate things a reaction may not always be immediate. Last year I flared a few weeks after painting my shed. I think it was probably down to being outside for so long in the sun, but who knows?

And in the end we all still have to get on with our lives, but just do what we can to protect ourselves.

Oh the joys and challenges of lupus! Good luck xx

[Chapter]

Hi, all good advise above so I won't repeat. I would like to say that because you make it through a day without reaction does not mean you can do it again tomorrow. I have found it takes approximately 48 hours for me to flare after what I thought was a day I was being safe. I do react with headaches, pain and very rosey cheeks after short time outside in summer (with hat), to long in big box stores, a day on computer, sitting by window or travelling in car. But, the three serious flares I have had, surprised me. The first from lights, second from sun reflecting off of snow onto my sun screened face (30 min) and the one last month from reflection off of water on my sun screened face (20 min). So loulou2209, hats are great,sunscreen is great, but every situation is different so keep an eye on those beads. I will look for some of those myself.

[loulou2209]

Hi Chapter. Thanks for all your advice. I am currently off work and have been since I fell ill in September 2013 with two spells in hospital and an SLE diagnosis and light testing confirming uva allergy. I love the sun too so am a bit fed up about that. my job is in an office with huge windows and huge lighting and I work on a computer and also use photocopiers. I hope to go back to work but don't feel able yet and I also felt so sick and suffered a lot of headaches and migraines everyday. Its going to be hard working out how to work in an office when I feel bad there. A work risk assessment will be done when I go back but I don't really know what to ask for yet to enable me to work when I feel better. Suffer with abdominal pain, migraine, painful eyes, muscle and joint pain everywhere it seems. hopefully feel better after my uva1 treatment finishes in a few weeks. fed up being in the house too exhausted to do much. This site has helped a lot. thanks again.

[Kate-L]

Hell loulou2209 - Like many others who have posted, I'm also sun sensitive and have been diagnosed with SLE. I'm sorry to say my days of sun worshiping have gone! As well as wearing a high factor cream, I wear light clothes and a hat - always a hat, I don't sunbathe any more and I've stopped going on t 'beach' holidays in Summer as its just too upsetting not to be able to join in.

I I find the sensitivity is worse when I am in the car, so have now had my back three windows blacked out - the garage did this for me but I think you can buy a kit and do it yourself (possibly from Halfords). My front windscreen and two side windows are as tinted as the law allows.

To protect my eyes I've bought some great 'wrap around' sunglasses from Boots with prescription lenses - they are brilliant and really help my eyes in hot weather. I wouldn't be without them.

There's been so much helpful advice posted, I do hope you manage to find a happy medium which suits you and your particular skin sensitivity. Keep well and stay safe in that sunshine!

[loulou2209]

Thanks Kate-l. Will get the permavard for house and car windows as my car isn't tinted and also my house has a Southfacing livingroom and the beads are really changing colour. Also will buy a hat too. Thanks again everyone.

[Melinda]

I have subacute cutaneous Lupus which affects the skin, and I have to use SP50 sun cream. I also wear a hat on sunny hot days. I get my hats online from Village Hats. They have a variety of styles and some are UV protected.

[loulou2209 in reply to Melinda]

Thanks Melinda I will have a look and buy a few. Never saw myself as a hat person but will have to now. Probably get a few funny looks but I don't want to be as ill as I was last summer so don't mind.

[Porcelain-Jane]

Off to the retail park today to find a my 'Lupie' hat! Am currently using a factor 50 which is ok but my face, chest and top of my arms where my 'butterfly' resides is still a little aggravated so will investigate some factor 100 as described by Smartcar. My eyes streamed all morning yesterday and drove me crazy, hopefully my new hat will help, will let you know

[loulou2209 in reply to Porcelain-Jane]

That's funny you should mention your eyes streaming. I have only recently had one eye in particular swollen runny burning sensation and my vision in that eye is blurred. Going to doctors tomorrow about it. I end up feeling sick and having a splitting headache. Don't know if it's related to sle. It's so uncomfortable. Had uva1 treatment of 26 sessions it not convinced it changed anything. Thanks again to all your replies. Appreciate them all.