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A. G. Moore
08-04-2012, 09:14 AM
Hi,
I haven't posted in a while because I have been busy writing a memoir and trying to get it out. Writing is my way of fighting back at lupus and other issues that limit function. However, I have continued through the months to read posts on lupus support sites. One issue that keeps coming up and that is very close to my own concerns is photosensitivity. Many people who post seem to take this aspect of lupus casually. Everything I have read tells me that whether or not you get a rash in the sun, if you have lupus you should avoid UV radiation, from a natural or artificial source (such as fluorescent lighting). As we all know, lupus can be vicious and treatment is not always effective; sometimes the only thing we can do is try to prevent a flare. Maybe if we understand how UV radiation hurts us we can protect ourselves more. According to research (done by Dr. Victoria Werth at the University of Pennsylvania, for one) exposure to UV in susceptible individuals leads to apoptosis, which is the death of cells. It's the accumulation of the dead cells in tissue that leads to inflammation. I don't mean to get technical and boring, but I think we have to be soldiers in our own defense and information is our best weapon. A couple of links to research on this topic are:

http://www.thelupussite.com/news119.html

http://www.nature.com/jidsp/journal/v9/n1/abs/5640134a.html

Hope I don't sound preachy; I just want everybody to be as well as they can be.

jmail
08-04-2012, 11:25 AM
Sunlight and flourescents adversely affect me, but in varying degrees, dependant upon the given situation. My thinking (remember now, I've got lupus, and may be warped... tic) tells me that other factors can influence my "reaction" to them. Such that, it seems that if I'm tired, or already feeling puny, that just a little goes a long way, but that other times, I'll hardly notice any effect. Reminds me of that "bio-feedback" stuff from years ago...

n.mac
08-04-2012, 04:12 PM
I absolutely agree with you- sun exposure does more than just cause sun burn and rashes.
If I over do it I will end up feeling overall poorly-everything from flu like symptoms to internal swelling.
and I believe it can trigger flares.

I have done better overall since I have been more carefull about sun exposure!

Niall

rob
08-04-2012, 05:55 PM
I absolutely agree with you- sun exposure does more than just cause sun burn and rashes.
If I over do it I will end up feeling overall poorly-everything from flu like symptoms to internal swelling.
and I believe it can trigger flares.

I have done better overall since I have been more carefull about sun exposure!

Niall

I couldn't agree more Niall,

I have told people many times that a sunburn could easily end up with me going to the E.R.

People I know well, people who know that I'm not one to exaggerate or embellish, still look
at me like I'm full of s**t when I tell them that.

UV exposure can set up a chain of events that can easily land us in the hospital, or worse.
This is a fact that I try to impress upon all who are newly diagnosed, so I appreciate the
links, and the sober reminder.

Rob

inkmouse
08-27-2012, 07:45 PM
Ever since I was young I would get low grade fevers with nausea and vomitting every time I went to the beach and my parents couldn't figure out why. Now when I'm out in the sun for 20 minutes or more I get these... lesion like things that look like hives or blisters on my face and arms, my eyes get yellowed and I get extremely nauseous and dizzy almost like I have heat stroke. It's absolutely depressing and the worst part of living with this disease. Does anybody have these sort of extreme symptoms? I have gotten tunnel vision and fainted from the sun before, but not for a couple years...

n.mac
08-28-2012, 04:49 AM
Inkmouse- Like you I used to get extreme reactions similar to yours from very minor sun exposure.
I have been diagnosed not quite 2 yrs and have now survived my 2nd summer-and a very hot sunny summer it has been here in the midwest!
Overall I am doing much better especially when it comes to skin rashes etc.
I credit plaquenol(my one constant among my many meds) and taking better precautions against the sun. Never underestimate the benefits of sunscreen and simply staying covered with long sleeves and hats!
Take Care Niall