Discoid lupus

[Luciab06]

Hi, I only found out last week that I have discoid lupus. I’m am slightly worried as I booked a holiday to Turkey in August which is super hot! I’ve asked my dr a few questions but I don’t seem to have an awnser as they are unsure so I thought I would ask the experts who live with this.

I have on my face shoulders and chest and backs of my hands and head. what I want to know is if I do go in the sun with high factor sunscreen will the areas I don’t get it then get it? How much sun can my body tolerate? Is this different in everyone? I’ve booked this holiday with my daughter and want to be able to enjoy with her so I don’t want to be stuck inside most of the day. Any awnser would be much appreciated

[sohraz]

Hi Liciab06... if you are covered up you’re safe.. Use a sun cream lotion with the highest SPF50+. I use the boots Soltan baby50+ these days. Its inexpensive and good. Try to keep a hat on when you’re in the sun and don’t forget to keep repeating application of your sun cream after a couple of hours.

I have had Discoid Lupus for 16 years now. I start getting a rash if I stay in the sun for too long.. SPF 50+ keeps me safe. I remember initially when it started, it was on the back of my hands, my face.. even my scalp and back. So its basically on the areas open to the sun. I suggest just dip yourself in sun cream and you’re safe😅.

[Luciab06 in reply to sohraz]

Hi, thanks so much this has made me feel a lot better about going away.

Thank you

[flo_IarFachYrHaf]

maybe buy a big [and a small] uv protection umbrella. I have a whole wardrobe of umbrellas! Love Umbrellas usually have a smallish pagoda shape umbrella silver on top black underneath [black underneath helps prevent reflected light], it withstands quite a lot of wind and small enough not to be a pain when in busy places. When I was in Cornwall in the spring two people came up to me and said how lovely it was - a nice change from the odd looks I get for complete cover up and umbrella! I get generally ill from too much light, not discoid lupus

Craghoppers and Rohan do shirts and hats that are UV protective.

[Luciab06 in reply to flo_IarFachYrHaf]

Thank you for the advice and where I can get things to help

[Maureenpearl]

You can get special uv clothes and hats to buy online. I buy mine from a company in Australia, I have a special hat that covers my not just my face but the back of my neck and long sleeve coverup which is very light.

solbari.co.uk/UV/Clothing‎

[Luciab06 in reply to Maureenpearl]

This sounds great advice thank you

[flo_IarFachYrHaf in reply to Luciab06]

I'm really fortunate and have parents who design and make clothes so I have uv protection cotton as lots of the synthetic fibres make me prickly and static.

as well as solbari there is uv-fashions.co.uk. AND you can get long & short leggings and long sleeved tops from all sorts of places that protect to uv50 for swimming. I bought coolibar from uv-fashions and a long sleeved surf top in a sale.

there is also Rit Sunguard UV protective laundry treatment that I haven't tried out yet.

[Luciab06 in reply to flo_IarFachYrHaf]

Thank you all of this is so helpful and I knew it would be best to ask the people that have this on a day to day basis as you guys have far more knowledge.

Thank you

[Paul_Howard Partner LUPUS UK]

Hi Luciab06 ,

You've had some great comments from other members of the community already. We have a couple of articles on our website which may also be helpful for you.

Coping with light sensitivity - lupusuk.org.uk/coping-with-...

Going on holiday with lupus - lupusuk.org.uk/going-on-hol...

I hope that you are able to have a wonderful holiday and feel well. Take care.

Let us know how you get on.