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Old 08-09-2007, 08:13 AM   #1
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The sun..learning the hard way.

So since I am newly diagnosed I am still trying to find my way with this disease ,and one way I seem to be doing it is by testing my limits. This past weekend I took my 2 visiting granddaughters to the beach.( We live about 20mins away from the beach.) Up untill now I haven't had a problem with sunsensitivity,but after being at the beach for 4 hours I ended up with a fiery rash up both of my arms. Yes ,I did take a beach umbrella,but did I stay under it?? NOOO! I'm such a sunworshiper and this is hard for me. But I've learned my lesson. My question is. What should I put on it to ease the burning? I've been using cortisone creams ,but they aren't really helping. Do I just need to wait it out? How long will it last? It didn't seem to trigger a flare. My case of lupus is still very mild and since starting the plaquinil I feel almost normal,so I sometimes forget there is even something wrong with me. But then I get a wake up call such as this one that takes me right out of my denial..
Thanks ,Kate

 
Old 08-09-2007, 09:50 AM   #2
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Re: The sun..learning the hard way.

I have used a solution called , pardon my bad spelling, "domeburrow", I spelled it like it sounds, you can get it at most pharmacies and it has to be dissolved in water, it is great for any type of rash. Can you take Ibuprofen? If you can, it may help with the inflamation. Wishing you all the best

 
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Old 08-09-2007, 03:31 PM   #3
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Re: The sun..learning the hard way.

Hi, personally, I have found in the past that rubbing pure aloe on it helps best, and I mean getting a plant, breaking it open and rubbing it on. It is gooey, though but it really helps and makes it feel cool. Plus, there are no other chemicals or alcohol in it to further irritate the skin.

 
Old 08-09-2007, 04:36 PM   #4
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Re: The sun..learning the hard way.

Thanks ...I forgot about aloe. I used to use it on sunburns a long time ago. I'll also check into the other remedy. I'm sure this won't be the only time I will have this problem. Thanks again....Kate

 
Old 08-11-2007, 02:55 AM   #5
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Re: The sun..learning the hard way.

Good morning, kathryn+2. I don't think you said WHICH type of lupus you've been Dx'ed with, e.g., SLE vs. SCLE vs. DLE (etc.). Here's something I was told by both drs. who Dx'ed me with SCLE: that rashes can "cross subsets". What that means: in addition to the rash(es) most associated with the form of lupus you have, you can get OTHER lupus rashes & other non-lupus rashes, too.

I'd had nonscarring rashes on my arms & torso, so after Dx, I was covering up pretty well (long sleeves & trousers, sunblock, etc.), but I still wore a SUN VISOR, which left my scalp exposed to sun. It was gently [ ahem!] pointed out to me that I could get scarring "discoid" lesions on my scalp, which can cause permanent scarring & hair loss.

Immediately, on the way home from that appt., I bought a couple of serious hats with broad brims. And, my luck, I eventually did get one scarring lesion, on my face.

Someone here sometimes says, "The sun is our enemy." This applies not just to skin concerns, but also in the broader sense of the wide array of systemic problems lupus can cause, some of which are truly profound.

I must sound like a nag, but at least you can mull these things over. Plus, photosensitivity varies: I'm VERY, but you may not be. Anyway, sending you best wishes & hoping your sunburn calms down quickly, Vee

 
Old 08-11-2007, 03:55 PM   #6
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Re: The sun..learning the hard way.

Thanks VeeJ for that info. I really haven't paid much attention to the sun and I probably should be more vigilent. My Dr .never specified what type of lupus I have. She did say that some people aren't as sensitive to the sun,while others are very senstive. So far I haven't had any problem with the sun except for that one day at the beach. I drive around most of the time with my sunroof open and ride around on the back of our motorcycle.( with a helmet of course) So far so good. Like I said I;m testing my limits, which some people may find stupid, but I really don't want to give up these pleasures if I don't have to, so there's only one way to find out if it's going to be a problem for me and that's to keep on doing my normal stuff untill ,a problem ensues.( if one ensues at all).... I do have my Dr's blessing. She only told me to "listen to my body "and I'll know what is right and what is wrong for me.

I do aprreciate you sharing your knowledge with me. I know it's not nagging ,but concern on your part. Thanks again.. Kate

 
Old 08-12-2007, 07:06 PM   #7
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Re: The sun..learning the hard way.

I completely understand about the denial. I call it "pretending I'm not sick." I do it a lot until I wake up feeling like I've been eaten by a lion and then pooped out and eaten again.

The sun stuff is hard for me too but I've finally given in to the fact that I'm allergic to the sun. I now where long sleeved sweaters everyday (and I live at the beach...so talk about funny looks) and stay out of the sun as much as possible.

If I don't, I feel it within 24 hrs. Usually, I don't get sun sores unless I've been in the sun several days in a row but the rash can come within 15 minutes of exposure. The worst part though isn't even the sores... it's the fatigue and nausea. Ugh.

Sending hugs your way, hope you are well.

 
Old 08-13-2007, 02:00 PM   #8
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Re: The sun..learning the hard way.

Yeah..I can relate to the denial part. My husband and kids were all telling me to get out of the sun that day at the beach but I blew them off and then paid for it later. The whole 2 weeks my grandchildren were visiting I was "full speed ahead" the the whole time,.and I felt great. They left on Thurs and on Sunday I totally hit the wall. Felt like I'd been run over by a truck a couple of times! So I guess I'm learning the hard way that I need to pace myself. I've always been very active and athletic so it's been difficult for me to slow it down. Like I said ...I'm still in the learning process.

Thanks for sharing ....good luck to you. Kate

 
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