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JaymieArnold

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 #1 
Hello everyone :)
I'm 19 years old and currently a student at The University of Oregon and I was diagnosed with lupus 2 weeks ago. I am currently taking plaquinal waiting patiently for it to work. However, I'm very concerned with the idea of not going in the sun ever. I live for doing water sports like wake boarding and wake surfing and I love sitting out by the pool. What are the effects that the sun has on those of us with lupus? Does it apply to everyone or just some of us? Thank you!
Cakelady

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 #2 
Hi and welcome

The sun will make your lupus usually worse. You can still go out but wear hats and long sleeves, lots of sun screen and I swim when the sun goes down. If I am in the sun fir ant length of time I end up on the bathroom floor throwing up for at least 24 hours

Everyone is different you just need to find what works for you

Good luck

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Robinj

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 #3 
Yes, the sun can be that bad. It can increase disease activity, something you may not necessarily see or feel. Also, Plaquenil will make you more sun sensitive.
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upstater

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 #4 
I have the same concerns, and this will be the first summer since being diagnosed with discoid lupus and UCTD. I did see a dermatologist who specializes in "complex medical dermatology" with an interest in autoimmune disorders. She did tell me to be careful in the sun, wear sunscreen with helioplex at 70 SPF, but did say that it didn't mean I could never go to the beach, pool, etc. But to be smart about it. I did used to lay out in the sun and bake. I will never do that again. But I would guess that this is another one of those areas where people experiences may be different. Some may be more sensitive than others. I know I get rashes and don't react well, so I will be very careful, but don't plan to hide in the house (at least at this point!).
Robinj

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 #5 
Hi Upstater
I have DLE as well and the sun avoidance is key to keeping lesions at bay. I have heavy tint on the windows of my car and that helped a lot.

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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
upstater

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 #6 
It's interesting, because the biopsy that came back as discoid, came from my scalp. In back of head - just above hairline - and was red, scaly, irritated, but no hair loss that I am aware of. It cleared with Betamethasone, but the derm says it still looks red (hard area for me to see). The rest of my scalp was irritated, dry, itchy throughout the summer/fall. I might have had some overall hair loss - I did have some breakage at the crown - but nothing that someone else would notice.

The rash I got in the sun on my chest did not look like discoid and initially was diagnosed as PMLE (polymorphic light eruption) - but who really knows what it was, as it cleared and that was never biopsied. And then my face is just generally kind of irritated - redness and burning sensations. I do think florescent lighting may factor in sometimes.
NineLupusLives

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 #7 
Hi Jamie,

The sun can be a trigger for Lupus flares, but not all Lupies experience that trigger. Try to keep a watch on when you have been in the sun, and whether you have a flare afterwards.

If you find a correlation, your days in the sun may not be worth it to you anymore.

Take Care,

9 Live

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UhOh

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 #8 
Yes, It really is that bad. I am a beach bum and was diagnosed after moving to Southern California. The sun is super strong here and stronger everyday. I use a ton of sunscreen, hat, sunglasses, cargo pants, long sleeves, socks and shoes and I still notice more fatigue and joint pain here lately. The sun (UVA/B) increases the production of cytokines (IL-1) which can initiate an immune response which in the case of SLE, goes overboard. I avoid the sun as best I can, but I still garden, hike and go to the beach occasionally. Keep in mind, that clothing only provides like SPF 5! You still have to wear sunscreen under, however you can buy clothing with SPF 50 built into the material. hugs, UhOh
taffylinden

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 #9 

YES! And for ALL lupus sufferers!!! About 50--70% of lupus patients experience a sun rash from sun exposure, but the sun affects everyone with lupus  because it triggers an autoimmune response:

The immune system gets rid of old and dead cells.
Exposure to the ultra-violet light triggers a more cell death.
Cell death causes the immune system to rush in to get rid of those cells.
In lupus patients, the immune system rushes in but that doesn't remove the dead cells as effectively. The inflammation resulting triggers lupus all over the body, particularly the joints. 

The others here can tell you I love to hike. I used to live in a sunshiny place with beautiful mountains. I wore sunscreen and a broad-brimmed hat, but I never once hiked in the sunshine without paying the price in sore joints and fatigue. Eventually I moved to where there's a lot less sunshine. Talk to our rheumatologist about what you can and can't do. With some changes, you may be able to enjoy your favorite outdoor activities, though  in a more limited way.  

Best of luck!

Sky

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 #10 
I had to rid myself of sun at 18-19 years of age. but whose counting. It was due to vitiligo. Try and explain that to someone back in the 70s. Trying to fit in and the lonely feeling of trying to find shade or someone's shadow to avoid the sun is exhausting. At my age now 62 (dam.. I'm old) I can't say it does not haunt me in the season changes, Summer!! But with being dx at age 23 with lupus, the sun takes a toll on my body. I get weak, fatigued and just not right. Now I do
my best to cover up. I don't use the term
"The sun is my enemy ". I've looked at it much differently. The sun gets the grass green, flowers bloom, trees blossom, my grandchildren playing etc. but again I Must avoid the exposure of the hot sun rays. It triggers my lupus.
It's a pain and just not fair I inherited this crazy gene and it's not my fault.
Robinj

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 #11 
The SPF clothing is expensive and not too attractive in my opinion. There is also Sunguard. A wash in product for clothing. You can get it here:

http://www.sunguardsunprotection.com/index.html

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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
TXgirl

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 #12 
I could barely keep my eyes open today at work. My co-worker asked how much sun hVe you been in lately? Too much. I have a rash on my chest, shoulders and upper back. I wear SPF 50 sun screen all over every day plus long sleeves, brim SPF 50 hat and sunglasses. It's kicks my butt everytime. My son calls me a vampire.
RufusRick

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 #13 
I use 110 SPF for my face and it still burns and messes me all up.  I thought 110 would surely do the trick, it does not, but I will use it anyway.
TXgirl

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 #14 
Who makes 110 SPF? I've never seen it. I need a stronger SPF for sure. I use neutrogena because it's a light mist and I live in a VERY humid area.
RufusRick

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 #15 
Neutrogena does and probably others.   Age Shield Face Sunblock Lotion SPF 110 with Helioplex is what I have.  I found it at Walgreens, other stores should have it too. Search for it and you'll find it on the internet.  I've seen other versions too that are 100+ SPF. I see it's even on Amazon.  I hope this helps.  Here it is http://www.neutrogena.com/product/age+shield-+face+lotion+sunscreen+broad+spectrum+spf+110.do
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