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Hi Everyone!

I had the “big” appointment this past week where I got the official SLE diagnosis and tons of information! I will say that it pays to have a doctor that is so incredibly knowledgeable! Dr. Wallace knows his stuff! Anyway, he started me on Plaquenil 400mg per day. I am hopeful that this drug will do for me what it has done for some of you…only time will tell I guess. I do have a question that I wanted to throw out there to all you experts:

The sun really kicks my butt and I am worried that with summer coming (and me living in sunny Southern California) that I will have major problems in the coming months. How do you guys cope with the heat/sun. My kids will only put up with being cooped up in our air conditioned house for so long…does anyone have any advice or strategies that have worked for them?

Anyway, I just wanted to thank you all again for your help, advice and support as I start this journey. It is nice to know that you guys are here to talk to!!

~Dale
 

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The Other Illinois Tammy
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Dale,
You could go to a dermy and get some expensive sun screen (and they do work for the most part) that is higher than you can buy on the market. There is also sun screen clothing that you can buy that will reflect the suns rays. I am not sure how much they are but it might be worth the investment if you can be with your children even for a few hours a day. I do the stay in the air but I live in the midwest (Illinois) and it is sticky hot here. I have to be in the air and out of the sun. I can not even be in the sun under the shade of a tree. If I do I have a flare which as we all know is never a good thing. I hope some of my ideas help you to have a great summer with your family and flare free for once lol. I hope you are well and doing well.
 

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Hi Dale,

Try not to go out during the hottest time of the day.
I wear long sleeved shirts and try to wear a hat when I go outside.

I buy my sunscreen from places like Target, WalMart. I just make sure it is fragrance free,waterproof, and sweat proof,oil free and paba free. The one I have is recommend by dermatologist. It is Neutrogena, sensitive skin. spf 60+ broad specturm uva-uvb.

There is sun treated protective clothing you can purchase too.

Even on cloudy days the sun can cause trouble with us. :(
Take care,
Lyn

It is great you have such a wonderful rhumey.
 

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Hi Dale,

It's great to hear that you got that official diagnosis and can hopefully now move forward with the correct treatment. Like you said, you were lucky to see one of the best :)

I'm afraid I don't have many tips for the sun other than staying very covered, wear a hat (yep, I know, I don't do hats much, look silly in them - maybe you'll look fabulous) and lots of frequently reapplied sunscreen.

I have to say that the sunscreen is really ONLY for bits that can't be covered as it offers me far less protection than clothes.

I also try and do as many activities pretty early on in the day or later when the sun has gone in a bit.

Katharine
 

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Hi Dale

I feel a bit like a vampire when the sun comes outlol Try to keep in the shade, walk down the shady side of the street. Wear a hat long sleeve shirts.My Lupus also brings me out in sweats feel like a rainforest some times.You can buy clothing made from bamboo fibers that is supposed to keep you cool and is antibacterial too..Dont know weather its spf though.Take care I wish you well:)
 

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There's an SPF wash that I think Rit makes, that might be helpful to use with your existing clothing.

I find that a hat is an absolute must always and sunscreen on exposed areas. Even with that I have to stand in the shade and absolutely limit my exposure. It's hard with little ones but necessary I found. We used to visit the beach around sunset if we went, there are some ways around it.

love
Lily
 

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First off, I'm glad to hear that you have Dr. Wallace! Lucky you!

How old are your kids? My kids were 5 and 8 when I was diagnosed. I'd always been pretty sun-sensitive, but when the lupus really kicked in and then they put me on meds, I have very little tolerance for the sun. It was tough at first for my kids and myself to learn my "boundaries" as far as the sun goes. Some things I learned the hard ways. It is all a matter of cost versus benefits. If I'm in the sun, I pay. There are very few things I'm willing to risk getting really burned or sick over. Sometimes I joke that I've turned into a vampire because I just plain can't be out a lot during the day. Even with high SPF sunscreen, I can get a second degree burn in about 10-15minutes. I also feel really crummy and can't do anything after so that is a big detourant. It took me a while to realize that even the shade of a tree or whatever isn't that high of an SPF. I don't really burn, but I wind up feeling crummy if I'm out a long time under the shade. I agree that sunprotective clothing and such are really important, but the biggy is that you will likely have to change your lifestyle. We go to the pool during the very late afternoon or evenings and I still have to be very careful. There are definately sunscreens that are much better than others (even if the numbers are the same). Ones that have both a physical and chemical barrier system seem to work a whole lot better for me rather than just chemical. They have ones that are fairly clear and aren't scented.


Amy
 
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