Tips for the Summer

[LouLamb]

Wondering if anyone had any tips on how to manage their lupus in the sun. I went to south end yesterday, i didn't think i was that bad in the heat. I was wondering how people managed their lupus. Any tips or ideas

[Doreen2014]

Plenty of sunscreen on your face and body.

Wear a hat to keep the sun off you face and if need be tops with long sleeves .

Sit under an umbrella in the shade.

You can buy certain clothing ranges that are for sun sensitive people.

[Hidden]

I think Doreen has said it all! I get my sunscreen on prescription. Best to wear a total sunblock. I stick to the shade in the rare occasion that we get the sun over here!

[Patricia2015]

Agree with Doreen and Shazzer.

About the sunscreen. I have UCTD and didn't get it on prescription. 

I bought La Roche-Posay Anthelios XL 50+ sensitive skin/sunallergic skin spray. 

I use it from early spring to late autumn and of course if you go to the mountains you should always use it.

Expensive but it really blocks the sun. I use it on my face and my chest.

The other parts of my body I use cheaper sunblock brands. 

This works for me, hopefully also for you.

[LouLamb in reply to Patricia2015]

All I noticed was that I got a head ache 

[Bebe76 in reply to LouLamb]

Hi Loulamb

Before I knew I had lupus I noticed I got headaches and fatigue after a day in the sun. After being diagnosed with lupus I was told to stay out of the sun even though I  don't get rashes because damage from the UV radiation may trigger flare ups (it doesn't even have to be the point of sun burn). Now I use sunscreen and wear a hat if I am out in the sun for hours and make sure the get some shade and stay hydrated. Also I think being on meds that helped keep my lupus under control  also reduced these heat/sun-induced headaches.

[LouLamb in reply to Bebe76]

I also have raynaurds and was wondering if I wore shorts in the sun would that affect the coldness to my feet and hands 

[Bebe76 in reply to LouLamb]

Hi Loulamb, I don't have Rayaud's so I'm afraid I can't provide any advice about that one. Perhaps you can post a new question on the forum and others will have some good advice.  I do get cold feet all the time, even in the summer, but the doctor has not diagnosed me with Raynaud's as I do not have episodes where my feet turn purple/white.

[Sudi]

Hi, pure/organic coconut oil is a natural sun screen, good all round health product in every way & can be used every day snitch builds up nicely over time. Always use hats, How this helps  

[Hidden in reply to Sudi]

You put OIL on your skin in the sun? It works????

[Sudi in reply to Hidden]

Hi, yes it's a natural sunscreen, works a treat, protects really well. Obviously with Lupus you naturally have to take care but it's solved everything for me. Other creams make me break out which is uncomfortable. Pure /organic coconut oil can be used anywhere inside & out of the body. Have more info if needed, 

[Hidden in reply to Sudi]

I looked it up. I was intrigued because my natural inclination is to avoid oils in the sun. Even before lupus, I always had to be careful in the sun. interesting. 

[Paul_Howard Partner LUPUS UK in reply to Sudi]

Many 'health' sites claim that These sites maintain that coconut oil is a great way to get a healthy tan and Vitamin D from the sun without the risk of burning. However any dermatologist will tell you, no tan is a healthy tan; any prolonged exposure to ultraviolet rays damages skin cells, even if you don’t burn. Moreover, coconut does not provide a notable Sun Protection Factor (SPF). So, exposing yourself to the sun after slathering yourself with it is really not much better than putting no skin protectant on at all. We would therefore not advise this as a safe alternative for anybody with lupus.

[MargaretGail]

I always use a parasol 

[Wendy39]

Hello. I really suffer in the sun. The above replies are right, it doesn't only effect us lupies skin - with visible symptoms but it can set off lupus flares with unseen damage. So it is important to take care in the sun. I actually wear factor 50+ Ego Sun Sense on prescription all year round on my face. In the summer, I have to cover with clothing, that the sun doesn't shine through. So always long sleeves and normally trousers or long skirts. If I am going to the beach with my children I will wear a rash vest - ie a long sleeve factor 50+ vest. I could not go out with shorts and a vest and cover myself in factor 50, it's not enough for me. I also sit in the shade whenever possible. If that isn't possible it's a big floppy hat. We have even had a sun canopy with factor 50+ protection material, fitted on the house so that I can sit safely outside the garden in the summer and watch the children play. That being said, all lupies are different. Some cannot go outside and they have special costing on their windows to protect them whilst inside. Others aren't sun sensitive at all. We have to work out for ourselves where our safe level of exposure is. No matter how careful I have been since my diagnosis in 2013 the sun seems to have a commutative effect on me and by September I am in a flare. Good luck finding your level. Best wishes. 

[Wendy39 in reply to Wendy39]

Special coating on their windows, even! Predictive text! 

[Silverlady51]

Hi Lou lamb, I agree with all the comments, I use nivea SF50 FOR KIDS! even with no sunshine I apply this after moisturising applying on all areas, as I have DLE mine is particularly over the butterfly rash.  Good luck x

[trixabelle_]

I went to Turkey last year and the temperature was in the mid 40s! I drank gallons of water and when I got too hot I got into the sea or pool. The days where it was unbearable I went and laid down with the air con on. I wore factor 50, topping it up often and actually came away from the holiday the most tanned and it lasted months haha. I got a few rashes which I expected. 

[Paul_Howard Partner LUPUS UK]

Hi LouLamb,

We have a factsheet about 'Lupus and Light Sensitivity' which you may find helpful at lupusuk.org.uk/wp-content/u...

We also have a section on our website which has loads of information and advice for people who are light sensitive - lupusuk.org.uk/eclipse/

[Wendy39]

LouLamb, I should also say that last year we ventured to Crete in May/June half term, for the first time since my diagnosis, as a little experiment. It wasn't boiling hot. Mid 20s up to 30 max. My Rheumy was horrified when I told her on my return. But like I told her, when I am home, I am a wife, a mum to 3 children (now aged 8,10 and 12) and I work part time and generally run around like a headless chicken when at home, like most mums. Of course I collapse into my bed a lot earlier than most in the evenings and need the odd nap or two.But home life is chaotic and I don't get much chance to take care of myself normally. However, on holiday, we went all inclusive, no cooking, no house work, no washing or ironing etc. the children played in the pool most of the time, whilst I in my long sleeved rash vest and baggy long summer trousers and floppy hat, sat under an umbrella. I read 2 books. I rested. I had time to carefully apply sun cream, even to my hands! I never burned and I never got ill. My hands are the things that suffer the most for me during the summer months, as what with washing hands, washing up etc and rushing around, I don't always have sun cream on them in the summer months and they burn, crack, bleed and sometimes get infected. It was a success anyway. So this year we have booked a holiday in Italy with friends and their children. The house has an outdoor covered eating area and lots of parasols and shade etc. I will be very cautious. But I can't let my sun sensitivity ruin my life or my children's childhoods. It's constantly experimenting what is right for you, weighing up the risks. It might take you a few summers to get an idea of you will be. x