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Hi-
I have never been affected by the sun...Italian and tan well. No rashes or side effects to date that I've notices. I have SLE with no organ involvement. Is the sun still bad for me? Thought that was just a concern for discoid lupus? My doc said some patients says the sun say it helps their lupus? What's up?

Cindy
 

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Hi again,

I think the sun can effect anyone with Lupus even if your coloring is as you describe.

I am blond, freckled and very Irish and the sun is truly my enemy. It hates me, plain and simple.

If I spend too much time outside I am done for days.

I hope others come along here with better answers.

I do know that the sun never effected me 5 years ago the way it does now and with every passing year it gets worse.:mad::mad::mad:
 

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I'm in the camp that believes a little sun is still good (10-30 minutes during non peak hours). I certainly get that in every morning (early morning when I walk my dogs). This way my vitamin D levels stay in a good range.

I think about half of lupus patients have overt symptoms of rashes or increased joint pain/fatigue with sun exposure. Even if you don't have obvious effects from the sun, it may still not be your friend for several reasons including UV radiation, skin cancer, wrinkles, age spots and the belief that UV radiation causes cellular damage that lupus patients have a harder time clearing out and may contribute to a worsening of lupus symptoms.

So there are a multitude of reasons to not spend too much time in the sun, especially if you have lupus.
 

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Hello there . . .

I have been wondering about problems surrounding skin exposure too. I've never particularly suffered in the sun but do have a freckly pale skin so have always tended to avoid sunbathing etc just because I don't like it to be honest! However, I have only recently found out that I probably (!) have lupus (I'm still waiting for the rheumy to write to me with confirmed repeat test results which he hasn't yet done ... why am I not surprised?) However, I already know that I tested positive for the anti-Ro antibody which is an indicator of photosensitivity . . . so why am I not even more prone to rashes and sunburn etc? I have recently developed a few sore places on my face and neck area which I am wondering if could be due to sun exposure - any ideas what creams to use on these anybody? I'm not keen on using suncream all the time (unless outside for a long time on a walk or something) as they tend to give me a rash or spots themselves so I favour avoidance!

I look forward to seeing what others have to say about dealing with the sun!

Best wishes,

Lily
 

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Hi,

I have lupus, joint pain but no organ problems or skin, the sun and warm weather helps my joints as long as I use high factor 30+ on my face, the rest of my body is fine.
 

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The sun sometimes effects me, sometimes it does not. A few times my knees and ankles swelled. Other times I have had a rash from it. Other times fatigue, fever, head ache. But other times nothing !

I always put sunscreen on now no matter what. Even driving in the car.

I usually find shade whenever outside but I do get sun while driving, walking, etc.

I would say take precautions, not only for Lupus, but also for your skin !
 

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I guess everyone is different when it comes to sun exposure... I was told by my rhuemy that the sun was not my friend and to avoid it at all costs.... something with it breaking down cells or something... *shrugging my shoulders* so I use lots of sun screen and try to wear hats when I'm out.
 

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I have lupus (sle) and i never used to have problems in the sun but last week decided to sunbathe with factor 12 on.... 4 hours later my legs start aching and im feeling 'hung over' and can barely keep my eyes open. the following day i woke up with incredible joint pain all over my body and had to spend a few days in bed. whilst not so bad now, i am still getting aches and pains........so i can only conclude that for me, i have to avoid prolonged exposure.

i used to love the sun but now will have to be more mindful.
 

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other factors

Red head ( Italian and polish ancentery...go figure!) has the usual ability to burn to a crisp with minimimum exposre...not neccessarily a lupus thing. I think the exhaustion after being in the sunlight is lupus related.

All the same, even if the sun hasn't effected you, you should be weary about the sun if you are on certain medications for lupus, they can increase your photosensitivity.
These can include :
NSAIDs
Gold
Hydroxychloroquine (plaquenil)
Methotrexate
Sulfasalazine
diuretics
antibiotics
tricyclic antidepressants
So check with your pharmancy. From a non sun worshipper because I don't like pain,
take it from me...sunburns are no fun.
Joanne
 

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Having a dark skin certainly doesn't prevent those cellular reactions that can trigger or aggravate lupus, but not everybody with lupus is photosensitive.

Hormonal intake is another common cause of increased photosensitivity, however Plaquenil usually decreases it. Unfortunately a few people have a sort of photosensitive reaction to it.
Imuran ( azathioprine) also increases photosensitivity.
By the way gold and sulfasalazine are used for rheumatoid arthritis not lupus.

These days everybody should take care about sunshine or tanning beds. It does the skin no good at all. Skin cancer rates are rising alarmingly and the long term effects on the skin of constant sun exposure are very unattractive unless you are turned on by leather and prunes. Nobody should be running around fully exposed in the peak sun hours, as a public health principle
There is evidence that disease activity increases even when there are no visible signs.
Avoidance and protection come first in the defence line - sun screen is only an additional aid and can't be expected to replace the first two.

I never know what the phrase 'helping' lupus means. Warmth can ease joint pains, and a pleasurable activity like enjoying a fine day, promotes wellbeing but I have never heard any lupus specialist endorsing sun exposure.
Photosensitivity can develop and I recently read it can wax and wane but you only know when you have suffered.
My advice is to be sensible and see how you get on. Many of us have learned only from bitter experience.

Take care
Clare
 
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