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Thread: PHOTOSENSITIVITY in LUPUS

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    Default PHOTOSENSITIVITY in LUPUS

    Abnormal light sensitivity, or "photosensitivity," is a major feature of both systemic lupus erythematosus (SLE), which can affect any organ or system of the body, and cutaneous lupus, which is mainly limited to the skin.

    The two most common forms of cutaneous lupus are discoid lupus erythematosus (DLE) and subacute cutaneous lupus erythematosus (SCLE). DLE and SCLE are described in detail below.

    How common is photosensitivity in lupus?

    The American College of Rheumatology loosely defines photosensitivity as "a skin rash as a result of unusual reaction to sunlight." Using this definition, photosensitivity has been identified in one-half to three-fourths of people with systemic lupus.

    In people with cutaneous lupus, photosensitivity affects 50 percent of those with discoid lupus and 70-90 percent of those with subacute cutaneous lupus.

    How does photosensitivity show up in lupus?

    1. Sunlight can cause new skin lupus lesions (sores).
    2. Flares of internal lupus disease, including joint pains and fatigue, can also be triggered by sunlight.
    3. Some medications increase the effects of the sun on a person's body. People with lupus taking these drugs including tetracycline antibiotics and many othersmay also very occasionally develop "phototoxic" reactions. These will lead to easy sunburning, so if you are taking these "photosensitizing" medications, you will need extra protection against sunlight. Ask your doctor or pharmacist if any of your current or new medications might make you extra-sensitive to the sun.

    Why are people with lupus so photosensitive?

    The science of sunlight in lupus is complex and poorly understood.

    1. Several studies over the last 30 years have looked at the role of ultraviolet (UV) light in lupus.
    2. UV light is invisible radiation from the sun. It has a shorter wavelength than the visible light and heat we all recognize.
    3. UV is divided into UVA, UVB and UVC (which does not reach us because it is absorbed by the atmosphere).
    4. In general, UVA mostly ages the skin and UVB mostly burns the skin ("A Ages, B Burns") although UVB also contributes considerably to skin aging and cancer.


    1. The first rule is to stay out of the sun, especially during the middle of the day.
    2. The second rule is to wear a good protective sunscreen of SPF 30 or higher. Use the sunscreen on all exposed skin areas, including the hands.
    3. The third rule is to wear a hat with a broad brim.
    4. The fourth rule is to wear long sleeves.
    I have Lupus. So *^#@! what.

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    Default oh thank you

    this is what I needed to see. The sunlight has become a physical adversary for me. Part of this must be mental.....but it's gotten to the point now where I literally feel the "weight" of light. Too much exposure (and I mean minutes) makes me feel too tired to stand up....or even raise my head properly. I'm at the point where I dread going out during the day. It makes my head hurt and my eyes hurt! I feel completely weakened! Really? Is this normal or am I losing my mind?

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    I get chronic fatigue if i stay out in the sun to long. i do not get a rash, at least not yet.

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    How much sun is too much? With protection and without? Can I get by without protection early in the day with the UV index below 2? Any idea if trees( both leaf and conifer) block the UV? Just trying to figure out what I can live with, and what I can't! And it is ok if you don't know! I just keep looking for answers and keep asking questions! Thanks! Roger

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    Each person is different, each person at different times/conditions is different, and medications can make a difference, in both ways, for sensitivity. In other words, it varies greatly. For me, it's best if I avoid direct sunlight when ever possible. It looks weird, but I wear a long-sleeve shirt and broad-brim hat to the beach (which I seldom do), and slather on the high-spf (50+) sun screen. Some folks are even susceptible to indirect sunlight. What can really be vexing is the flourescent lighting, since some places use "good" bulbs, some places use "filters", and some place just use whatever, which can make it tough to plan for a visit to the store. "Experimentation" is the name of the game.
    "There but for the grace of God, go I."
    "... His mercy endureth for ever."

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    Jmail
    Any idea what distance is a safe distance for the flourescent lights? I have them in my shop with 4 about 12 feet from the floor and 2 about 8! I am at a stage where things seem to be changing rapidly! I am just trying to decide if it is all due to the UV or if it is some other cause! These fillet knives in the ribs are no fun! Over the last two weeks it has been harder to pin it on UV, although back in May, we were sure the sun was the trigger once we learned about it! I have only been on the Imuran for about a month, and am not sure yet what that may or may not be having to do with it! Thanks for the responses! It all ads to the puzzle solution! Roger

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    It'd be nice, wouldn't it, if there was a formula you could just plug data into, and get an answer? But again, it varies. I'm sure the bulb and the fixture influence, as would any plastic diffusion screen you'd put in front of the light. There was a warehouse store we go to, that prior to them changing their lighting in the store, I'd experience all sorts of weirdness after visiting there. We went there one rainy evening to get new tires on the car, and shopped. We were there for over two hours. A bit after we got home, I broke out with a rash, and did the malar thing on the face that "blistered" the worst I'd had up until that point. I missed several days of work from the flare. We couldn't figure out what happened to me, until a couple years later, they re-did their store, including the lighting, and they put up signs stating that their lighting was now "UV-Safe". I'd get a milder reaction from work when they had the old row flourescant lighting in there. Most of this
    http://en.wikipedia.org/wiki/Fluores...mps_and_health
    article I don't know about, but the "Other Conditions" section, I can attest to, both with the lupus and the migraines...
    "There but for the grace of God, go I."
    "... His mercy endureth for ever."

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    No, it is not in your mind. It is a physical reaction that many of us experience in the sun. Even indoors, the lights in my house will cause such aggravation that I get a horrendous headache.

    Sensitivity to light is one of the most common features of Lupus and it makes us go running for darkness. So, you may join the rest of us in that area and know that you are not losing your mind. What you are experiencing is, unfortunately, very real!

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

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    Does this also cause problems with your eyes? I have to wear sunglasses no matter what when outdoors especially while driving, indoor lighting causes them to throb and a headache. I was told it could be migraine related and allergies but I dont always have the migraine when I have the eye pain. Also headlights at night hurt my eyes.

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    My eyes never used to be bothered by the sun, but the past two years, the glare of the sun bothers them alot. I wear suglasses always when I'm outside.
    The sun also triggers 'eye migrains' for me sometimes. Do you have blue eyes? Blue eyed people are also more likely to develop macular degeneration when they get older.... I read this. It's the Ultra violet rays that hurts the retina. I don't remember reading which of the UV rays. I have had Lupus a long time. I have had the beginnings of macular degeneration for a long time, but fortunately, it is progressing very slowly. Perhaps staying out of the sun so much during my life helped! So, with Lupus and blue eyes.....sun is something to avoid!!

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