lupus of the skin

Hi, i have lupus of the skin which i was diagnosed 3mths ago, I find it quite hard avoiding the sun and i have even bought a hat though i am not a hat person, i have even started to buy UV protection clothing which i find quite expensive. I plaster myself in 50+ sunscreen each day my work colleagues will soon call me slippery Sam with all this cream.

i am a little worried to how i am going to manage when i go to Austin in USA.

in September.

any advice please


11 Replies

  • I'm a discoid lupus suffer!

    I have been for about 15 years! X

    No one can avoid the sun! X

    You are doing everything right!

    I advise you to go to your go and ask for Sun Sense factor 50+ broad spectrum lotion... Or you can buy it on line.... It's the best out there ... And you don't look like you've just slapped a load of lard on your face! Ima you can imagine.. Xx

    Just make sure you wear you large brim hat , denim and thick linen shirts with lotion underneath.... Plenty of fluids!!

    Make sure you wear shades for the eyes as they will be sensitive as well! I went to grease for 2 weeks! Stayed in the shade , and rested! I had a great time! You will be fine! Just look after yourself! X unfortunately you can kiss goodbye to suntans! X xxx

    How are work with you? Are they helping??

    I wish you well.... X

  • Hi thank you for the advice, work does not know only my colleagues and they are quite sympathetic to my condition. i don't have other problems other than what my skin shows, i work for the NHS front line in a clinic so i do feel conscious of the marks on my face and arms as they are on show.

    I know i have to wear long sleeve's and i do but some times show some of my arms in work as it gets too warm.

    Do you think fluorescent lights have an effect on the skin? i looked it up on the web site and it mentioned this.

    I will check out the sun sense factor 50+, thanks.

    I wish you well---:)

  • Hello. I have Subacute Cutaneous Lupus (SCLE) which is a sub group of both discoid and systemic lupus. I am sun sensitive. I was diagnosed in November 2013 and so I still feel quite new to this! I am going to Crete tomorrow for a week with my husband and 3 children. It is the first sun holiday we have been on since my diagnosis. I feel I have to at least give it a go, for their sake. I knew we wouldn't be able to go in the school summer holidays as it would be too hot. Average temps should be 24/25. I have. 4 rash vests - which are factor 50 and long sleeved and high necked. I recently bought one from Boden, online, they have a nice range with matching bikini bottoms. I also have a selection of hats, good sunglasses and the Ego Sun Sense Ultra sun Cream Factor 50+, which I get on repeat prescription from my GP. I also wear thicker clothing - linen and denim, maxi dresses, or light weight cardigans to cover my arms etc. I just hope that this little experiment goes well. I used to enjoy summer and travelling. So fingers crossed! I also can recommend the Ego Sun Sense Factor 50+, Daily Face, invisible tint finish. I buy it on Amazon and with delivery it is about £15. Oh, also last summer my husband was fed up of me hiding inside the house all the time and not spending time outside with him and the children, so we got a factor 50+ awning for the side if the house. Wasn't cheap but I have used it a lot already this year. It means I can get fresh air and read a book etc, watch the children, eat outside. Good luck with the summer and your trip to the US. Wendy

  • Thanks for that Wendy it make feel as though i can still enjoy the outdoors and i hope it goes well with you in Crete, let me know how you get on.

    Madhead (Carole)

  • Hello Madhead. Just wanted to let you know that my holiday went very well. I wore the rash vests I had each day, with baggy, dark trousers, with a floppy hat, sunglasses and factor 50 on my hands, face and feet. I stayed under the umbrella when the kids were in the pool. We did a day at a water park and I went on a few slides with the kids, I wore the sun cream on my legs and a headscarf to protect my head. The accommodation had air conditions too, which was lovely to keep cool. I have been tired since I have been back, but I am tired most of the time anyway - well Monday to Friday, as I work part time and have 3 children to get to school etc. plus we had an over night flight and drive home, which has taken its' toll. I did get a couple of boils/sores on my face this week but they have been small and healed up quite well. So all in all I am pleased. To be honest today has been hot here, 18 - which compared to Crete at 24-26 is nothing, but to be honest I think I cope with it better on holiday. I could rest, sleep, read by the pool under the umbrella, no alarm clock in the morning and I wasn't working or rushing around with the children. Plus I had the time to think about putting my sun cream on and re applying. Today was exhausting at 18, I worked and had my daughter's swimming lessons, had to go to the supermarket etc. sometimes at home, I forget to out cream on my hands before I go out, as I might be rushing etc and then I get into trouble. Last year I burned my hands in a matter of 2 hours out without cream on them, they got infected and took 8 weeks to heal. So I am very pleased with how the holiday went. But I would never take it for granted or be blase about it. I know some people cannot go out during the summer months at all and have to put a special cover over their windows at home etc. None of us know what our future holds for us with lupus. I wish you well and hope you can relax and enjoy your holiday in the U.S. Wendy

  • Hi Wendy,

    I am so glad that your holiday went well, so it was quite hot then

    and you managed it, well done!, it just shows that we still can relax and enjoy it even though we have to cover ourselves from head to toe.

    I am coming towards the end of my week's holiday boo hoo!,

    went to Norfolk to Wells next to sea on Wednesday sat on the beach in the shade it was great therapy to just watch the world go by, made sure i put my sun cream on reg- i have a lovely big rash on my left cheek at the moment and on the ridge on my nose so i didn't escape it totally, i hope that the sores on your face heals soon. It was a bit difficult in the car going home as the sun was on my side of the window i should really have sat in the back as it was shady.

    By the way i purchased the sun sense 50+ daily face cream, brill!!

    less greasy did'nt feel that i had thick cream on my face and it gives a lovely tint as if i have a slight glow.

    i am not looking forward to the tempreture when i go to Austin as it will almost be in the thirties + still i'm sure i will cope.

    warm wishes

    Madhead Carole

  • The SLE I have began with discoid lupus 41 years ago. The face creams I like best are Aveena and Neutrogena as they do not leave a greasy feeling on my face. I forget what the sp factor is but I understand the highest ones are false advertising. After the sunscreen, I put on make-up to cover a nonrelated birthmark and then a base over all. Many people mistake the birthmark for lupus. I took my kids to the beach, coached soccer, went on their field trips. I wore long sleeves and a hat. I recently decided that all of us wearing hats, can think of ourselves as being in the same league as Princess Kate. For me, it makes wearing it less burdensome. I look for cute ones and add a piece of cloth in the crown when necessary.

    Driving is almost worse than being in the sun. When in the sun, I usually can find some shaded space and move with it. Driving, I have to keep moving the sun visor.

    I've had some Oops problems but use the cortisone cream and keep on going. The itchiness (tingling), that occurs before the spots is almost worse. The hair loss in the crown is problematic. My hair is very thin.

    For swimming, I have worn the non chic swimming cap or a bandanna. The sun does not bother me when I'm in the water. The minute I come out of the water, I put on a cotton shirt and cover my legs.

    I wish you the best Madhead.

  • I know what you mean about driving i am the same trying to move my arms and face away from the sun beaming down through the side window its very hard to escape.

    i have decided that i am going to have a spending spree and buy a few hats i only have one at the moment as being new to this.

    Warm Wishes

  • Make sure that you try on a variety of styles and find ones that frame your face nicely. It is amazing how many hats there are out there, in all price ranges. I picked up a hat for $1 in the Dollar Tree and wore it for vacation. I tend to leave things, hats included. I figured I wouldn't get upset if I lost a $1 hat. I pulled a string thru to tie under my chin, no need to have to chase it. I also went thru my second hand jewelry and put an open rose on the band. I usually try to get neutral colors so they mix and match easily. One other idea I have, is to buy a head scarf and wear it like the women from the Mideast do.

    There have been times that I thought fluorescent light affected my scalp. This has been less of a problem recently.

  • Thanks for the idea's i will certainly put them into practice, when i go to visit relatives in Austin in September i am going to buy a few things as they seem to be a lot cheaper in the USA, here in the UK it sucks as things are just so expensive.

  • Enjoy your visit with relatives!

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