I have always been fine in the sun.... will is affect me? I've just been diagnosed with lupus sle

I was diagnosed with spondylitus in Nov 2006 and the pain has become increasingly worse until it became unbearable about 3 months ago. After many tests I have been diagnosed with lupus SLE.

I have never had a problem in the sun. I have been to many hot countries and sunbathed and have not suffered with a red face or fatigue... Does anyone else have LUPUS and does not have a problem in the sun?

Is the rash etc going to hit me soon? Should I refrain from going in the sun? What should I do?

I'd really appreciate some advice.

x

7 Replies

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  • I may be wrong but i think it is something like 60% of people with lupus have problems with the sun. So not everyone with lupus has problems. I personally do have problems, having developed a lupus rash a few years ago. But when i was first diagnosed with SLE in 2001, one of my symptoms was photosensetivity. Perhaps thats a clue to whether or not someone with lupus will have problems with the sun.

  • i worshipped the sun loved to have a nice tan. never had a rash untill 2 yrs ago when it got me i was covered head to toe in the rash & it was so painfull for months have to wear factor 50 now so no tans for me any more. so just be careful if you go in the sun and start to feel unwell .

    take care x

  • Hi, I was diagnosed with SLE 6 years ago and I am fine in the sun - had a lovely holiday cruising around the carribean last year! I do however try to remember to use a sun hat whilst sitting in the garden. I feel quite poorly at the moment but I have a bit of a tan and my consultant couldn't believe how well I looked when I saw him earlier in the week - that'll teach me to sit in the sun lol!

  • Hi Keepsmiling - it's the fact I don't get a rash that is holding my rheumatologist back from saying I have SLE even though I'm pretty sure I do, so I think some people just don't get one. He just says to be careful in the sun so maybe you can develop it later than the pain

  • Hi Keepingsmiling,

    I am black and the sun still affects me it has done so since I was a child and then it didn't for some years until the Noughties. Now I have to wear a hat, sun glasses with UV protection and factor 50 sun block when I go out into the sun. Even sitting in the car the sun will start to burn me and I will have a rash.

  • Thank you all so much.

    I think I'm in a bit of secret denial about having lupus. My main problem is painful joints and muscles getting tight and painful. I get tired but not unbearably so... One day I can be fine and then the pain arrives... I am taking medication now and feeling really good so I'm hoping that will continue :o)

    I think I should just listen to my body and not overdo things. I will go out and get a sun hat for when the weather brightens up....if ever!

    I didn't realise the rash was painful. I'm learning so much. Thank you x

  • Hi Keepsmiling

    I don't think that the sun causes the Lupus, just that it makes some people feel worse.

    My initial diagnosis was because of the rash (non painful). I continued to holiday in the tropics, being much more careful with higher factors, sleeves and hats and it was years later before I got the severe pain, fatigue and all the rest.

    Hydroxychloriquine cleared up the rash eventually and I very rarely get it now. More recently it presented with the typical buterfly markings on my cheeks - which gave me a red flush that everyone thought meant I was healthy!

    Margaret

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