Discoid lupus - so upset :(

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Sunshine29
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Date Joined Jun 2009
Total Posts : 219
   Posted 8/8/2018 2:40 PM (GMT -6)   
Last year I was diagnosed with DL from a skin biopsy on my upper chest area. Im 47 years old and never had a skin problem before. I dismissed it and convinced myself that I didn't have it. However, July 26th I woke up with swollen eyes and raw eyelids. I also had dry chapped skin on the corners of my mouth. I went to a different dr today because the rash isn't getting any better and she confirmed that it is a DL outbreak. Im so upset over this.

Tinkerbee
Regular Member


Date Joined Feb 2013
Total Posts : 58
   Posted 8/8/2018 3:24 PM (GMT -6)   
Were you given anything such as a steroid ointment/cream for flares? You MUST avoid the sun and be diligent about sun protection with DLE.

Sunshine29
Regular Member


Date Joined Jun 2009
Total Posts : 219
   Posted 8/8/2018 3:45 PM (GMT -6)   
She gave me a non-steriod cream since it is on my eyelids. I'll put it on before bed. Avoiding the sun isn't easy. No more enjoyment in the summer months. I have to get a good SPF lotion. Do you have DL?

Tinkerbee
Regular Member


Date Joined Feb 2013
Total Posts : 58
   Posted 8/8/2018 4:17 PM (GMT -6)   
Yes. Since 2012. I hear what you are saying, but if you want to be lesion free, you have to consider the sun an enemy. I use Neutrogena Ultra Sheer sunscreen SPF 100 DAILY.

Sunshine29
Regular Member


Date Joined Jun 2009
Total Posts : 219
   Posted 8/8/2018 9:18 PM (GMT -6)   
Do you use it all over your body or just sun exposed areas? Any other tips? The Derma gave me Elidel cream for my eyes and mouth area.

Tinkerbee
Regular Member


Date Joined Feb 2013
Total Posts : 58
   Posted 8/9/2018 11:02 AM (GMT -6)   
I use it on my arms, neck area, back of neck etc.. I use Cliniques facial sunscreen. Don't forget your ears! I generally wear ling pants, sleeves. I use a wash in product called Sunguard which washes 30 SPF into your clothes. There are sun protective clothing companies, but I find them pretty ugly and overpriced.

Sunshine29
Regular Member


Date Joined Jun 2009
Total Posts : 219
   Posted 8/10/2018 9:57 AM (GMT -6)   
Thank you for that information.
Did you stop doing outside activities such as going in the pool, beach, vacationing? Will my life stop due to fear of a flare up?? sad

Tinkerbee
Regular Member


Date Joined Feb 2013
Total Posts : 58
   Posted 8/10/2018 2:45 PM (GMT -6)   
I think for me, I would never dream of going to a beach or pool. I just don't care to go through having the lesions again. And I never knew why until my dx, that being in the sun actually made me feel phyically crappy as well.
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