Thanks Ann A for all this awesome info! Would you consider starting a new discussion with this info called "Sun Protection" or something? I have already added many of your links to my favorites. I really love the RIT Sunguard laundry treatment info. Then I can wear fabrics that are more lightweight and still have some protection.
Ann A. said:
From the Lupus Foundation of America
Sun Protection Products
Hi Alicia,
I want to emphasize what Ann has said and also agree that it takes time to make these adjustments and to even WANT to make these adjustments. It is a shock to us upon diagnosis - it took me a little while to get the "Sun" part - living in the south, the sun and heat are just parts of life. People kind of laugh at you when you talk about avoiding the sun! I remember what it was like. Sunscreen wasn't as "accomplished" back then as it is now - and I also didn't realize that the heat also caused me issues. I felt like a big whiner!
I think Ann is right in that if you take some time right here after your recent diagnosis to weigh the options and take these suggested precautions, you may save yourself some forced down time out of the sun. The options are SO much more giving today. If you are not fatigued, and you have energy - you really CAN still do all of those activities that you named and still be safe from the sun!
The improvements over the years are amazing! I wish you luck and please continue to do fun things - it is important that you do! These adjustments take time, understand that they took all of us time. You are doing well! :)
Hugs to you! Draginfli/Ang
alicia1310 said:
Thank you Ann.... I just meant that I have always swam, camped, canoed and hiked and never even had to worry about sun block before. I haven't done any of those things in a while so I have been limiting my exposure. Again... I was just diagnosed a few weeks ago so its not that I dont want to do things to make myself feel better, I'm just still learning what I'm supposed to do and not supposed to do and it's contradictory to what I'm use to.
Ann… U seem to have done a lot of research so I was wondering if u know if everyone who has systemic lupus is DEFINITELY affected in a negative way (whether it’s a rash, sickness, fatigue, etc.) by the sun or UV rays? Do u know if there has been studies or research to prove this? I read yesterday that the sun/uv rays cause rapid cell death (which is even more rapid for folks with an autoimmune disease) and during the cell death, DNA and ro is released into the body (outside of the cells) which causes the immune response, as the immune system sees DNA and ro as foreign objects… I guess that didn’t make enough sense to me because I still don’t understand if that means it applies to all people with these diseases. Is it safe to assume that a person who doesn’t get a rash in exposed areas, or easily sunburned is not affected by the sun/uv rays?
Perhaps this has already been answered somewhere in this discussion and I missed it.
Alicia, I am DEFINITELY affected by the sun, and yes there have been studies done. It's a medically proven fact that people with lupus have to avoid the sun. It's not just a rumor. Most of the comments in this discussion mention people who have negative reactions to the sun and even to the UV of fluorescent lights. You might want to browse the comments. This finding was one of the first findings as a way to avoid worse illness. It was discovered even before prednisone and plaquenil were discovered as treatments. It's always the first thing a Dr. tells me when we discuss lupus.
Best wishes, Sheila
alicia1310 said:
Ann... U seem to have done a lot of research so I was wondering if u know if everyone who has systemic lupus is DEFINITELY affected in a negative way (whether it's a rash, sickness, fatigue, etc.) by the sun or UV rays? Do u know if there has been studies or research to prove this?
Shelia… I understand that it’s always a caution… always something that people with lupus are told to avoid. But I’ve never seen or heard that it MOST DEFINITELY causes problems. I’ve never had a rash after being in the sun and the rash I have on my scalp is there regardless of being in the sun or not. I also know a woman who runs and lives a very active lifestyle outdoors who has lupus and she swears that as long as she eats right and exercises, she never has any trouble with her lupus. I wouldn’t swear by it or anything but I dont really think the sun affects me either. My husband (who is healthy but fair skinned) will fry like a lobster if he’s in the sun for 15 min. I could count the sunburns I’ve had my whole life on one hand. I have noticed that if I spend the entire day in the sun and heat… I get sickly feeling but the heat seems to be the bigger culprit. Being in the sun has always made me feel good (as long as I’m not doing anything strenuous). Maybe I’ve been misdiagnosed??? And again, I apologize if I’m repeating question or making statements that others have already said in this discussion. I’m usualy on my iPhone and it makes it difficult for me navigate around on this website.
Hi Alicia,
Everyone's severity of lupus is different. It's possible that if you have a very mild case, that you don't react to the sun. It's also possible that the sun does internal damage whether you feel it or not, which could cause problems down the road. I'm actually too sick at the moment to do the research for you, but if you google "Lupus and sunsine" and "Lupus and Ultraviolet" or Lupus and UVA-UVB" you'll learn some of what the big deal is. Extreme weather of any kind makes me react worse than sunshine does, but I still react to the sun. I'm very happy for you if you don't have reactions. I probably wouldn't be overcautious with the sun if it didn't bother me. just human nature to do as much as possible for as long as possible, until you have no choice but to take actions to protect yourself from misery. I don't have one of those phones. Can you search for subjects on them?
I hope your lupus never gets any worse.
Sheila
alicia1310 said:
Shelia... I understand that it's always a caution... always something that people with lupus are told to avoid. But I've never seen or heard that it MOST DEFINITELY causes problems.
Shelia, I did google it yesterday. That’s why I was confused. I’ll see if I can find the article I read and I will share it. I read several but this actually explained it in scientific terms and broke it down to a cellular level. My rheumatologist said that I had a mild case and fortunately, I havent experienced any MAJOR skin problems or any kidney or liver problems. I do have livedo reticularis, chest pains (which I should probably have checked out), low platelet count and sjogrens but my doctors have not really explained all this to me yet and I research everything I can all the time… There’s just SOOO MUCH. I guess maybe I’m grasping at straws 
I’ve mentioned a couple times before that I am newly diagnosed with SLE and perhaps still in some kind of denial. I know over exposure is bad for anyone. Just trying to figure out what some safe limits are.
Normally the iPhone is great… However most websites have a “mobile version” that pulls up from the iPhone. This one doesn’t so my fingers aren’t as accurate as a mouse for clicking links.
Thanks again 
Ann… Well said!!! I love your examples I get it… There’s no exact science to it or specific warnings but “the proof (or warning) is in the pudding” and it’s not worth risking. You guys are great… Thanks
Here is a link to the site I found…
Possibly. The docs are not sure yet what I have, but it's an autoimmune disease and right not it's either lupus or RA. It was finally cooling off here, and had the fall crispness in the air, and then 2 days ago, suddenly got hot and humid again. My joints are now stiff and sore again. And I'm so exhausted I can barely stand up.
reading again & getting more info from your reply 2nd time round. In hospital at the moment in a dark room covered in ice pacs' & NO med's bar Prednisilone 50mg. New Pathology due back tomorrow so hoping for a new direction. Am touched by how much posts & site in general is of comfort to me. Thank you all for your time. Kaz x
Ann A. said:
Dear Kaz,
In my opinion all flares are to be avoided whenever possible. You are quite likely to experience periods when your symptoms indicate the condition is more active and periods when they indicate that it is less active. If you can figure out what triggers a higher rate of activity - more frequent flares, flares that last longer, and flares with more severe symptoms then you can have fewer flares. That means longer periods of time during which you feel better; as well as longer periods of time when your body is not experiencing the destructive impact of inflammation.
http://medical-dictionary.thefreedictionary.com/inflammation
As you have already figured out, inflammation of our skin is not a harmless or benign condition. Skin is an “organ.” Our skin is the largest organ system of our bodies (integumentary system) and it is very important to our health and well being. It is our first line of defense against the harmful things of the outside world. The skin is responsible for transmitting information between the outside world and our bodies. It is the site of complex exchanges between our bodies and the outside world. To me this means that anything which attacks our skin and interferes with its ability to protect us, to transmit information, and to handle exchanges must be seen as important rather than dismissed with the words “just” or “only.” These things are to be avoided whenever possible.
http://health.usnews.com/usnews/health/articles/051114/14skin.htm
People who have been diagnosed with cutaneous lupus (lupus of the integumentary system) experience many of the same symptoms as people who have been diagnosed with systemic lupus. The fatigue and the joint and muscle pain don’t seem to care which diagnosis has been handed out. And given the new diagnostic criteria it only takes the development of one additional symptom to move from one diagnostic category to the other.
I honestly think that the distinction says more about what specialist we see for treatment than it does about how we live our daily lives. If they put you in the cutaneous category you see a dermatologist. If they put you in the systemic category you see a rheumatologist. And sometimes it works in reverse. If you see a dermatologist because you clearly have skin involvement, they will put you in the cutaneous category. While if you see a rheumatologists, you are more likely to ve put in the systemic category. These categories don’t say anything about how well you actually feel. And given the new diagnostic criteria it only takes one more symptom to move from one category to the other. So, I vote for avoiding symptoms whenever possible without stressing about which label physicians have put in front of the word lupus.
I find it interesting that you live in a place that does not experience drastic changes in weather. If the winter is T-shirt weather, then you must get a lot of sun the rest of the year. Are you photosensitive? If so, you can experience fewer symptoms by protecting yourself from direct and indirect sunlight and other sources of UV rays. If you are photosensitive, then the sun is your enemy.
I am very photosensitive. Several weeks ago I developed an SLE rash because I carelessly allowed sunlight to shine on my right wrist for 5-10 minutes. This did not happen so rapidly when I was younger. I actually feel rather lucky that it happens now because it is like having an early warning system which says, “This rash is what you got for five minutes in the sun. Do you want to see what happens if you get 20 minutes of sun?” Of course, I know what happens with 20 minutes of sun exposure and I plan to avoid it as much as possible.
Lupus is so unpredictable that it leaves all of us wondering how it will play out in the long run. It leaves some of us feeling as though we have no control over our lives. So, I really do like the idea that sunscreen and protective clothing allow me some measure of control over that aspect of the disease. I hope that this is in some way helpful to you Kaz. And I will be happy to try and answer any additional questions that you may have.
I will definitely take a look at your profile. J
Kaz said:Very interesting reading Ann A. I live in a place where the weather is roughly the same all year. Can get a bit humid in "summer' but winter is T shirt weather & bust out the occasional cardigan if outdoors.
I have a Q for you as a long term Lupus manager. I am a newbie & (fortunately) have the Cuteanous variant of Lupus. In a real mess at present. This is my first 'flare' 21 weeks & counting.
My Q - As a Cuteanous Lupus Pt, do I have to endeavour to 'avoid' flare ups in a similar fashion to Systemic Lupus Pt's? I mean will I likely experience peaks & troughs with Cuteanous Lupus (though with a narrower range of 'issus') as do Systemic Pt's?
The readings I have done seem to indicate Cutaenous Lupus as just "skin' issues. I'm not just skin issues right now & don't quite understand how the future may play out. I'm advised that only 20-30% of Cutaenous Lupus Dx tip over into Systemic Lupus.
Have updated my profile to reflect current meds. Thankyou in advance for your time.
Kind Regards Kaz
This was sooo helpful & reassuring for me. I have major flares during shifts in the weather & season changes. I had a doctor tell me that lupus isn’t affected by the weather. I thought bet he’d say different if he was sitting in my chair. The 6x I’ve had to be hospitalized for intensive week IV treatments were triggered by weather & season changes. Good to know i’m not alone. Now i don’t feel so crazy. Last nite when my doc came to visit me at hospital she too recognizes my major flares r triggered by shifts in the weather & seasons. #relieved. 
Well not many. I had a bad flare here n hospital last night. Guess what major thunderstorm w/possible hail tonight. Lol. I’m a better predictor than the weather man. I realize the weather here in Oklahoma is about to get crazy. So, I’ve decided to go back on my immunosuppressive meds along w/my Monthly IV treatments. I also finally started low dose pain meds. I had refused in the past but the pain is unbearable. I also. Learned that OK has a high percentage of lupus cases. I wonder if its due to factories & contamination of food, water & air. I am open to helpful advice from others… Season & weather changes usually land me in hospital.
Best Wishes to you Latasha Sweetie,
sounds harsh! Maybe the relatively unchanging weather where I live is not so bad after all! Hope you pull up quickly. Ciao for now Kaz
Latasha Burnett said:
Well not many. I had a bad flare here n hospital last night. Guess what major thunderstorm w/possible hail tonight. Lol. I'm a better predictor than the weather man. I realize the weather here in Oklahoma is about to get crazy. So, I've decided to go back on my immunosuppressive meds along w/my Monthly IV treatments. I also finally started low dose pain meds. I had refused in the past but the pain is unbearable. I also. Learned that OK has a high percentage of lupus cases. I wonder if its due to factories & contamination of food, water & air. I am open to helpful advice from others... Season & weather changes usually land me in hospital. :(
@Kaz. Thanks. I actually was proactive instead of reactive last night & I made it through the night pretty well. I was concerned about restarting my immunosuppresive drug because of side effects like losing my hair, the severe weight loss & stuff but the benefits outweigh the cost. 2 God b the glory. Ready to get out this hospital bed & into my own.
@ Ann A. Thanks very much for your advice. Much appreciated. I do have one of those books. I haven’t read it yet tho but I think I’ll start when I get out this hospital.
Yes ma'am. Weather is a factor in my flare ups. We get a good dose of all 4 seasons. (I'm in TN) Our temps have dropped and we've gotten a lot of rain and I am flaring big time. I do notice the degree varies. Sometimes the flare-ups aren't bad. Sometimes they are. I'm still trying to figure out my other 'triggers'. I know stress is one for me. I know certain 'rich' (processed) foods do. It's like solving a puzzle and getting one piece at a time. But thank you for sharing this info. I will find it most helpful :)