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Thread: PHOTOSENSITIVITY in LUPUS

  1. #91
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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.

  2. #92
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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!!

  3. #93
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    Does photosensitivity always give you rashes? Or can it just cause headaches and drain the life out of you? This is yet another symptom dating very far back that I've had problems with. I just always assumed it was fair skin and freckles:/ my eyes hurt too from the sun, and lights in my house, causing headaches. The only place that gets rashy is my face and sometimes neck /chest and it usually only lasts a few hrs, but even out in the sun for 5 mins my face turns bright red! just curious thanks!
    *Darla*-forever awaiting answers-

    Romans 5:5 "Hope does not disappoint"

    "If it wasn't for bad luck, I'd have none at all-and I'm Irish!"

  4. #94
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    I have only just begun to get large freckle spots on my arm from the sun. I don't get rashes though. It sounds like you are photo sensitive since you say you have been getting rashes from far back. Do you have discoid Lupus or SLE? I've had SLE for 47 years. At the time I was diagnosed, I was told to stay out of the sun because it caused Lupus flairs. Actually, after 20 years I slowly began going into the sun. For me it didn't bring on Lupus, but by then it was discovered not everyone was so sensitive to the sun. With your rashes coming like that, I'd be careful. What does your doctor say?

  5. #95
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    I'm not dx'd yet. They did a skin biopsy cuz I have livido reticularis on my greats, stomach and thighs but the results were normal. I am dx'd with an array of things but not put into on lump sum. I've seen pics of peoples skin after sun exposure and ihne doesn't get like that. It's mote like I looked burned but I'm not, it lasts for a few hrs then it goes away. However, for as far back as I can remember, the sun has always wiped me out. If I'm in it directly for more then 20 mins, I'm tired, weak and dizzy, as I mentioned, I chalked it up to my complexion. I'm going to a new rheumy and neuro sept 19th nd I'm praying for a dx. It's been far too long. I need to be treated for what's reeking havoc on my body:/
    *Darla*-forever awaiting answers-

    Romans 5:5 "Hope does not disappoint"

    "If it wasn't for bad luck, I'd have none at all-and I'm Irish!"

  6. #96
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    Hello. I can imagine that gong without a diagnosis can be so frustrating. You said youhave livido retcularis.... I have never heard of that. (actually, on this site I am hearing about so many conditions I've never heard of!). You said it lasts for a few hours before it goes away....I'm not a doctor, but at least that doesn't sound systemic to me. Hope you find out the answer when you go to your new docs on the 19th. Keep us informed !

  7. #97
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    Hi DeeMarie,

    I read your post asking about rashes from the sun. I can only speak from personal experience, so I'm not sure what the medical response to your question would be. But, I have fair skin and red hair, I always thought of myself to be sensitive to the sun, etc. I was diagnosed with Lupus this past April, so this was my first summer diagnosed. I tried my hardest to stay out of the sun and I would say in general that I did a pretty good job. There was one day that I went to the beach with some friends. I lathered on the sun block, but it didn't seem to be enough. I got a horrible headache and felt like I was overheating. I used to get heat rashes frequently, but I've never had the typical butterfly rash. As others have also mentioned, I have an eye sentitivity to the sun and have a very difficult time being outside (especially driving) without sun glasses on. I don't know if this is directly related to Lupus or not, but as the most of us.. I love blaming everything on Lupus! haa

    Hope this was at least a little helpful.. at the least know that others are experiencing the same!

    Oh, and sorry for my spelling, my spell check doesn't work on this computer and no time to edit!
    Best wishes,

    M

    Lupus, Secondary Raynaud's Phenomenon, Pernio (Chilblains)
    Plaquenil, Amlodipine

  8. #98
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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

  9. #99
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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."

  10. The Following User Says Thank You to jmail For This Useful Post:

    Roger (09-16-2012)

  11. #100
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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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