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Old 03-29-2006, 08:31 PM   #1
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Join Date: Mar 2006
Location: Watertown, TN USA
Posts: 6
Shoe Fiend HB User
Question Photosensitivity and Lupus

Hi! I am a newbie to this site. I have been diagnosed with Lupus for the past 4 years, but had symptoms for several years before. I have joint pain, hair loss, weight gain, skin rashes, and extreme photosensitivity. I was wondering if anyone has had any successful treatments for the photosensity and skin rashes. Plaquenil helped the joint pain and steroids have not touched my skin problems at all. I have the discoid rashes on my arms and chest and the rest of my body has purple and red rashes even though they never see the light of day!!! I do find that flourescent lights are harsher than natural sunlight in my case.

Thank you for any information!

 
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Old 03-29-2006, 08:45 PM   #2
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Join Date: May 2005
Posts: 194
dwallech HB User
Re: Photosensitivity and Lupus

I have lupus and I have extreme photosensitivity. I have to wear sunglasses even when in the car. I also cannot take any heat either. I still have a line on my legs from 1993 which was from being in the sun at a ballgame with my sock lines are still showing. I have found nothing to help except trying to avoid the heat and the sun. Each year I seem to get worse. Any help from others would be appreciated as I too have this problem

 
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Old 03-29-2006, 09:57 PM   #3
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Join Date: Feb 2004
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VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: Photosensitivity and Lupus

Hi. Have your drs. tried more aggressive treatments, beyond Plaquenil? Like Dapsone, the gold compounds, methotrexate, etc? I've seen quite a few drugs mentioned in DLE articles, for people for whom Plaquenil isn't adequate.

I met a woman a few years back who was taken off Plaquenil & put on chloroquine. It's riskier (greater potential for eye damage) and hard to get (may have to be specially formulated). So it may not be the best 2nd choice?

I always wear sunblock on my face & hats. But if I'm going to be in the car for a long drive, I put block on my upper body, too. My windshield really seems to intensify sunlight, even those it's supposed to have UV protection...

Shoe Fiend, could the purple & red rashes be something else? Like cutaneous vasculitis? (My ankles are pretty ugly with it.) Or purpura? Or petechaie?

Shoe Fiend, your screen name made smile & think of a great birthday card I gave to a friend. Cartoon on front of woman shopping, surrounded by shoes. Caption read: May all your birthday dreams come true. Sign on wall read: Buy one pair, get six pairs free. Anyway, WELCOME & hope you post regularly. Best wishes, Vee

 
Old 04-01-2006, 09:56 PM   #4
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Join Date: Mar 2006
Location: Watertown, TN USA
Posts: 6
Shoe Fiend HB User
Re: Photosensitivity and Lupus

Okay, I do love shoes. My mother just bought me 9 pairs and then I turned around and bought 7 more. My husband just can't believe that I need more shoes! My theory is that I can gain weight and I can still wear the same pair of shoes. I have been packing on the pounds lately since my lupus has been flaring up worse.

The purple rashes on my body are where I sunburned really bad at the beach on vacation before I was diagnosed. Several people including a dermatologist suggested sun exposure to help my skin....little did they know that it almost killed me! I tanned easily all my life - I grew up on a farm working outside most of the time. I had never had a major sunburn until my husband and I went on this trip to the beach and my entire body peeled for weeks and hurt miserably. I thought my ears were going to fall off. Since then the places I burned so bad have stayed a slight mottled purple and red hue and I am pale as a ghost everywhere else. My rashes are worse on my chest, back, arms, hands, and face. About the only places not affected are my lower back, calves, and feet. I wear sunblock, but honestly it is like the exposure effects me everywhere and not just where the sun or UV rays hit.

It is so frustrating going to church, my doctor's office, the grocery store, etc. and have to roast under the flourescent lights. They really seem to harm me more than the natural sunlight.

Also, I am running fevers all the time and my lymph nodes are swelling on my neck with no signs of infection. I have just been to the doctor for another round of bloodwork, so who knows? Lupus is just a surprise a minute!

Last edited by Shoe Fiend; 04-26-2006 at 07:12 PM.

 
Old 04-13-2006, 10:04 PM   #5
Junior Member
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Join Date: Apr 2006
Location: Seattle, WA US
Posts: 16
rosta04 HB User
Re: Photosensitivity and Lupus

Shoe fiend -

After reading your post I am realizing more and more how important it is to stay out of the sun or lather up well.. I am such a sun person its hard.. I had 2 small sun strokes just last summer for over doing it in the sun and honestly I was maybe in it for 3 or 4hrs nothing like a normal person would be doing just crazy. Like you florescent lights are brutal I could wear sunglasses inside and it would make me feel so much better.. I love darkness and candle light, my boyfriend hates it he's an electrician so he is all about bright lighting..lol.. Plaquenil has always seemed to work for me but I recently was put on Cymbalta its an anti depressant but am on it for fibromyalgia for some reason I feel this has helped with the photosensity as well..

Take care
Andrea

 
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