I'd be grateful for thoughts on the sun

[puffyface]

I went on a family skiing holiday last week and because legs aren't really up to skiing, I sat in the sunshine a bit. I was covered in suncream and since I have been taking hydrochloroquinine my skin doesn't seem to have a bad reaction to the sun. I felt good all week.

However, I am completely wiped out this week. Exhausted and in pain. Is it possible that the sun could have contributed to this? I am just trying to work out whether sunshine triggers this reaction.

Any thoughts would be very welcome.

Thank youx

[Paul_Howard Partner LUPUS UK]

Hi puffyface,

Approximately 80% of people with lupus experience some form of sun-induced symptoms. These can often be a general flare up of symptoms such as fatigue, headaches and joint/muscle pains. 

What factor of suncream were you wearing? Did you reapply it regularly enough? If you were in the mountains and surrounded by snow you would have been likely to be exposed to higher UV levels than usual. 

For more information about lupus and light sensitivity, we have a factsheet at lupusuk.org.uk/wp-content/u...

[puffyface in reply to Paul_Howard]

Thank you Paul. I was wearing factor 30. I thought that I just had to protect my skin so that it didn't itch or become rashy. I didn't realise that the sun causes other symptoms too. That's so sad! 

The factsheet is really helpful. 

[PMRpro in reply to puffyface]

If you were in the mountains you need at least factor 50 to sit in the sun for long at this time of year whoever you are - you are higher up and the sun is far more intense. I live up a mountain - we see lots of burned skiers at this time of year.

[puffyface in reply to PMRpro]

Thank you. I will use factor 50 in future. I definitely didn't burn...or even change colour...and had no obvious ill-effects on my skin.

 It's this week that I am suffering - extreme fatigue, aching muscles and painful feet. It was a very stress-free week, so I was just wondering whether the sun could influence how you feel...even days later. The fact sheet was incredibly helpful.

[PMRpro in reply to puffyface]

I know of someone with lupus who goes to the beach - with long sleeves, sunshade, sunhat, the lot, and still isn't able to spend long there without risking a flare.

It's said a lot of people get ill when on holiday - the lack of stress can also upset your immune system. 

Hope you feel better soon. 

[cuttysark]

Hi,

I always got a headache and felt fluey after lying in the sun even as a teenager. I am 62 now and have a lupus like autoimmune condition and now extremely sun sensitive. Even looking out the windows in a bright sunny day can trigger it.

I was told to wear factor 50 every time I go out ,and I live in Scotland ,so sun is a scarce commodity!! It is such a pity as I love the sun but the alternative is more miserable when it sets off a flare.

Maybe make sure you are taking extra Vit D if you are covered up most of the time.

Get the doctor to test it first so you have a base line. Mine was very low twenties which is too low so now I take a spray under the tongue every day. X