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Old 04-24-2009, 07:15 AM   #1
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i have lupus and i must stay out of sun does this include shade?

i have lupus and i must stay out of sun does this include shade?

 
Old 04-28-2009, 06:51 PM   #2
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Re: i have lupus and i must stay out of sun does this include shade?

I'm not sure if this will help or not but I just visited my Rheum. today and asked that very question. He says even patients that have the sun sensitivity as long as you are wearing a high SPF sunscreen (FYI they now make a 100SPF) and cover up as much as you can (light weight cotton long sleeve shirt, covered legs and a hat if possible) you should be fine. He said the Plaquenil will help minimize the possibility of a flare including minimizing the sensitiviy of the sun (unfortunately it takes several months for the full effects of the drug to be seen). I don't know about you but the thought of spending the entire summer season in sleeves and pants makes me completely depressed. I live in the midwest where the humidity can get ridiculous and the heat index can be unbearable at times. I think it will just take some time to figure out how much sun you can expose yourself to and still be fine. I am newly diagnosed (three weeks in) and still trying to get a grasp on all of the changes that keep occurring with my body. So long story short, my understanding is that our activities don't necessarily have to change it's just the way we go about them may. Hope this helps.

 
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Old 04-28-2009, 07:37 PM   #3
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Re: i have lupus and i must stay out of sun does this include shade?

i do fine in the shade. when im under the big burnning texas sun i have on a big hat and sun block. i alws feel fine if i just do a few little things.
have fun!

 
Old 04-29-2009, 08:56 AM   #4
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Smile Re: i have lupus and i must stay out of sun does this include shade?

Hiya, if you do venture out into the sun then be sensible and cover up well with light cotton clothing, long sleeved shirts and long skirts or even cotton trousers. Plenty of sunscreen and always wear a hat. Importantly don't forget sun glasses either as the sun can really cause problems in that area. In the shade it is not as bad at all but care still should be taken.

It is the ultraviolet (UV) waves in the sunlight. Ultraviolet light in the UVA and UVB wavebands is responsible. UV light damages cells in the skin (keratinocytes) causing them to die. In healthy people without lupus, these dead cells are cleared away quickly and any inflammation induced by the sun-induced skin damage is short-lived (sunburn).

One thing to note however, is that even if it is overcast and cloudy then the sun can and does - believe me I know from experience that I will never forget in all the years I have had SLE - come through and cause so many problems, so be very careful.

It is thought about 60% of people with lupus will be affected by sun exposure but even so it is advised that all of us do our best to stay out of the sun so as not to run the risk of actually being affected by it.

Hope this helps. Take care,

goldenwings
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I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.

Last edited by goldenwings; 04-29-2009 at 08:57 AM.

 
Old 05-27-2009, 05:55 AM   #5
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Re: i have lupus and i must stay out of sun does this include shade?

I know this is an old post but felt compelled to reply. I have RA, Lupus SLE, and Lupus Discoid. I also work outside in the summer. The discoid got so bad over time that I lost all my hair and developed scars on my face. AND...I was wearing 100spf! I wore a hat diligantly. (who wouldn't if they were a 48yr old woman with no hair!) I have the best docs in boston. This was challenging them. Finally we realized that it must be the new curly light bulbs that are good for the environment. So now this is my regiment. When I get out of the shower I put on 100spf on my entire body. I wash my clothes with Rit sun protection. I wear a hat indoors and out. My windows in my car are tinted and I have a child window screen on top of it. I apply sunscreen 2-3x per day. I also wear various kinds of topical steroids including for my hair. The good news...my hair has grown back! my skin looks better but still hurts. The scars will never go away. The point I am trying to make is that a lupus patiant must have a dermi that knows lupus. I would not have been in such trouble if it weren't for a dermi that didn't understand the disease. It has been over a years and my new doc has saved my life and my face

 
Old 05-27-2009, 07:16 AM   #6
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Re: i have lupus and i must stay out of sun does this include shade?

Kathy, hi. I think you can see that as patients, we differ quite a bit. I'm in the anti-Ro group, which is believed by some drs. to be particularly photosensitive. So I waited several yrs. before trying: went kayaking. BAD CHOICE! Got prominent scarring lesion on nose, surprising me, as I'd only ever had non-scarring SCLE lesions on torso/arms.

My rheumie & dermie had both warned me that "rashes can cross subsets". For example, people with SLE or the SCLE variant, who've never had scarring lesions, are nonetheless "eligible" for scarring lesions. While only a few will actually get them, knowing you *might* should make you cautious. And that's only the SKIN aspect: since UV rays can foment overall flares, you don't want other worse symptoms than skin to flare.

Looking back, I should have ventured out more gradually, avoided water at first (it reflects UV rays), and chosen a site where I had a 100% fallback (like INSIDE ). If your dr. says it's OK to try shade, I still think it's wise to "make haste slowly". GOOD LUCK! from Vee

 
Old 05-28-2009, 06:14 AM   #7
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Re: i have lupus and i must stay out of sun does this include shade?

Thank you for the replys. I was affraid of the answer but thought to ask anyway. Unfortuantely I have two young girls who love the outdoors. We have a pool in our backyard that on a normal summer would be used on a daily basis for hours at a time. Since I was only diagnosed two months ago I am still trying to figure out what I can and cant do and was hopeful the sun sensitivity was not as big of a deal as it is. I am still trying to wrap my head around the major changes in lifestyle my family is going to have to endure this summer. Thanks again for the information.

 
Old 05-28-2009, 09:48 AM   #8
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Re: i have lupus and i must stay out of sun does this include shade?

Hi Belliott, I was dx'd 4 years ago when I was 22 and I recently learned that florescent lights (long lights usually with a retangular covering) found in offices, stores, etc. can also affect people with lupus. Four hours under this type of lighting is the equivalent of being in the sun for two hours! Also, if you use the computer for long periods of time you should use one of those anti- glare screens over your monitor because the lighting from the computer could cause complications with lupus as well. Google"lupus and florescent lights" there is a lot of info about it on the web. I say all of this to let you know that sun sceen should not only be used when your going to be outside but while inside as well if under florescent lighting.

Blessed Beauty

 
Old 06-11-2009, 12:57 PM   #9
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Re: i have lupus and i must stay out of sun does this include shade?

Quote:
Originally Posted by belliott View Post
I'm not sure if this will help or not but I just visited my Rheum. today and asked that very question. He says even patients that have the sun sensitivity as long as you are wearing a high SPF sunscreen (FYI they now make a 100SPF) and cover up as much as you can (light weight cotton long sleeve shirt, covered legs and a hat if possible) you should be fine. He said the Plaquenil will help minimize the possibility of a flare including minimizing the sensitiviy of the sun (unfortunately it takes several months for the full effects of the drug to be seen). I don't know about you but the thought of spending the entire summer season in sleeves and pants makes me completely depressed. I live in the midwest where the humidity can get ridiculous and the heat index can be unbearable at times. I think it will just take some time to figure out how much sun you can expose yourself to and still be fine. I am newly diagnosed (three weeks in) and still trying to get a grasp on all of the changes that keep occurring with my body. So long story short, my understanding is that our activities don't necessarily have to change it's just the way we go about them may. Hope this helps.
My rheumy said that stay out as much as is possible. use the highest spf cover up ext. This also includes while in the car and in the house by unshaded windows. Just an FYI. My rheumy has many awards, taken many classes and speaks all across the US on lupus and fibromyalgia. Highly intelligent md.

 
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