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    Default this is weird

    Just diagnosed three weeks ago or so. Have not seen any rash, but have been careful in the sun anyway.

    Sunday was cloudy and rainy. Barely went outside.

    Yesterday it was cloudy and rainy in the am, then just cloudy in the pm. I was only outside to go to and from my car.

    Today, I walked the dog for 1/2 hour at dawn - i mean, it was barely light. Had a (broad-brimmed) hat on, shorts, short sleeves.

    My office has fluorescent lights, but they are covered (typical office transluscent plastic sheet)

    While shaving, I saw what sure looks (and feels) like malar rash -- there's no butterfly, but there's definitely red bumps across my cheekbone area and it has kind of a (minor) burning-prickling feeling.

    Is it 'normal' (i know -- it's lupus -- nothing and everything is normal!) for that little sun exposure to cause a rash? And since I can't see a rheum til end of the month, is there anything i can do about it, besides the hat/sunscreen/vampire lifestyle approach?

    Thanks all.

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    Widebody...

    The malar rash on your face maybe triggered by other factors that affect Lupus...stress, insomnia...eats. The malar really isn't a manifestation of the sun, but of Lupus itself. The sun can aggravate it, medicine can cause increased in light sensitivity...but Lupus is the cause. We do the sun protection rules to prevent totally or aggravation of all symptoms.

    You could live in the dark, but you would, could still have the malar rash.

    Sun protection is to prevent our symptoms from being triggeres, joint pain, fatigue, rashes.

    Photosensitivity is another manifestation, feature..symptom of Lupus.

    From lupus.org...
    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 others may 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.

    Take daily precautions while in the sun, for your whole body....

    Do you have any of the rashes and symptoms above mentioned for photosensitivity? You may have that...

    Me, while in the sun, I can get rashes on my forearms...my malar becomes brilliant red, increase fatigue and pain...but this year I am able to stay outside longer than before. I still take the same precautions but last year, just a few minutes outside it would make me nauseated, dizzy, rash and pain.

    Hope this helps...
    Love,
    Oluwa
    Last edited by Oluwa; 07-07-2009 at 09:35 AM.
    I have Lupus. So *^#@! what.

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    Default thanks, oluwa

    That's good information. I guess that's what I was really wondering - whether the rash is sunlight-related or can occur from other causes. I worked out pretty hard last night (i refuse to go down without a fight!) and maybe that was enough stress to kick it off.

    I really appreciate your helpful post!

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    Hey!

    I get a malar rash on my face all year round, like my rhuemy said it doesnt have to be sunny for the rash to come up, im hyper sensetive to sunlight, can get it just from sitting indoors all day.

    Like O O said its not just the malar rash i have probs with in the sun, the fatigue and joint pain eats me up, shame really coz our british summer is rather lush this year!

    anyway peace out

    ISDM
    **The next or $ raised WILL be the cure for LUPUS**



    ☺☻If YoU gOt OcD aNd YoU kNoW iT....wAsH yA hAnDs☺☻

    ..♪♫**.❤.**☆.。.*✿♪♫**.❤.**☆.。 .*✿

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Lupus is strange. Would you believe in 5 years I've never had the malar rash on my face ever? It's never happened. I get it on my arms, under my arms, on my legs and ankles too, but never on my face. But my mother, who was diagnosed with SLE 19 years ago has the facial rash almost all the time. I've always been extremely sensitive to the sun. These days, sun exposure gives me symptoms that resemble the flu. Fever, chills, body aches, it's no fun. I always have my spf one-million sunblock and my boonie hat handy wherever I go, and I stick to any and all shade along the way.

    Rob

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    yes, lupus is weird -- even weirder than diabetes, i'm finding. I have my new "Tilley" hat which was expensive ($70 for a hat?!) but my wife insisted it was by far the best-looking one at REI. And I've got my sunscreen handy at all times. Big deal here in sunny hot NC

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    Quote Originally Posted by rob View Post
    Lupus is strange. Would you believe in 5 years I've never had the malar rash on my face ever? It's never happened. I get it on my arms, under my arms, on my legs and ankles too, but never on my face. But my mother, who was diagnosed with SLE 19 years ago has the facial rash almost all the time. I've always been extremely sensitive to the sun. These days, sun exposure gives me symptoms that resemble the flu. Fever, chills, body aches, it's no fun. I always have my spf one-million sunblock and my boonie hat handy wherever I go, and I stick to any and all shade along the way.

    Rob
    I have never had a rash on my face the entire time like you! I am thankful for that; however, like you, I get horrible,yucky flu pain when I am in the sun and my skin will get blotchy on my legs and arms and itch sooooooooooo bad! It seems I can never put enough sun screan on and livingin the desert does not help!!!!!! Darn sun
    As I grow to understand life less and less,
    I learn to love it more and more.

    Age 29, Lupus for last 7 years

    Medications: Methotrexate, Lyrica, Celebrex, Flexeril, Theophylline, Bactrim, Xopenex, Lisinopril, Ultram

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Quote Originally Posted by Danica01 View Post
    I have never had a rash on my face the entire time like you! I am thankful for that; however, like you, I get horrible,yucky flu pain when I am in the sun and my skin will get blotchy on my legs and arms and itch sooooooooooo bad! It seems I can never put enough sun screan on and livingin the desert does not help!!!!!! Darn sun
    It's weird, isn't it? Sometimes the itch is on the surface in a group of raised bumps shaped kind of like sunflower seeds-I know, it sounds odd. But other times there's no real surface reaction at all, and the itch seems to come from underneath the skin, from the inside. Like there's pins and needles under my skin. I don't know how much of this is caused by MS, and how much is Lupus. It's maddening sometimes, especially when you just want to sleep.

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    Quote Originally Posted by rob View Post
    Lupus is strange. Would you believe in 5 years I've never had the malar rash on my face ever? It's never happened. I get it on my arms, under my arms, on my legs and ankles too, but never on my face. But my mother, who was diagnosed with SLE 19 years ago has the facial rash almost all the time. I've always been extremely sensitive to the sun. These days, sun exposure gives me symptoms that resemble the flu. Fever, chills, body aches, it's no fun. I always have my spf one-million sunblock and my boonie hat handy wherever I go, and I stick to any and all shade along the way.

    Rob
    I have never had it either....it is very strange...
    *~* Monique *~*

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    You know what?

    When i got diagnosed with lupus, my brother also came out in a malar rash! his diagnosis of lupus came back as negative, for someone who didnt go outside either?!?!

    So whats that all about i hear you ask?

    could it be that he does have a mild version of lupus?

    could it be sympathy pains of my lupus (we are so close ppl often think we are twins)

    he also came out in a malar rash on sunday....wierd stuff!

    ISDM
    **The next or $ raised WILL be the cure for LUPUS**



    ☺☻If YoU gOt OcD aNd YoU kNoW iT....wAsH yA hAnDs☺☻

    ..♪♫**.❤.**☆.。.*✿♪♫**.❤.**☆.。 .*✿

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