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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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    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
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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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    Many of us, with Lupus, suffer from Migraines and/or Lupus Headaches (much like migraines) and yes, the light affects us to the point where we must wear sunglasses ALL OF THE TIME! I keep at least 4-5 pair in each of my cars (depending upon the severity of my headache, I have to switch between different types of sunglasses). So, here again, what you are experiencing is quite normal for us. :lol:

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    I am so glad i read this today. I feel so much better knowing I'm not the only one having issues with my eyes. I've had migraines for years, but since being diagnosed with lupus, I ALWAYS need sunglasses, even on cloudy days.

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    Hi,

    Although I have been diagnosed with Lupus for about 7 years, this is the first summer the sun has really affected me. Causing Extreme migraines and all over rashes, nausea and vomiting etc.

    Yes, sun glasses and a wide brim hat seem to help even on the cloudiest of days.

    Cheers

    PaulaC

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    i am so happy to read this....my daughter's latest issue is major light sensitivity. she's wearing her sunglasses in her 2nd grade class at school! thank goodness for wonderful teachers. we've been to the eye doctor's, who thankfully gave us the all clear in terms of more serious eye issues. honestly, just happy to know we're not alone!

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    Wow, im happy i read this one too!

    I went to Florida to visit my inlaws and i was inthe sun with my daughter and when we got back to the house i flared so bad that i was done for the rest of the day! I almost threw up on the way back to the house and i got so tired i thought i was going to fall over.

    Light hurts my eyes so much these days too. I have trouble watching tv sometimes, it will kick in a migraine sometimes.

    My kids are having a hard time when i flare up,they're not used to mom being "out-of-it" so much. I'm the caretaker of so many of my friends and family that now their having a hard time understanding me not doing everything i've always done.

    I feel sad at times because of this. I'm also finding out that i really dont have TRUE FRIENDS. That hurts but i do try to be upbeat,I LOVE my animals thats for sure! They're there no matter what! LOL

    Actually my husband even kicked it up a notch in the taking care of the kids,house etc.!

    Out of something bad comes something good! Right? WOO HOO for that! LOL

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    Absolutely :lol:
    Look For The Good and Praise It!

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