living with discoid lupus

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Cindy K
New Member

Date Joined Aug 2012
Total Posts : 2
   Posted 9/6/2012 12:47 PM (GMT -6)   
I was originally diagnosed 15 years ago. Had the classic butterfly rash across my face and lesions on my arms.  Took plaquenil and steriods and it went into remission.  2 years ago, it came back and nothing is getting this under control.  Constant red spots all over my face and scalp.  Hair falling out and the impact on my self image is huge.
Everything I loved about my life... gardening, fishing, swimming, deer hunting, walking the dogs... All of that now creates huge anxiety if the sun is out.  It does not seem to matter what I wear or how much sunscreen I use.  If I go outside in daylight, the spots and rhe hair loss get worse.
On the weekends, I do not even want to get out of bed if the sun is out. 
I am alternating between severe anxiety and depression.  Intellectually, I know I could have a worse disease.  But, emotionally, I am falling apart.  Plaquenil is doing nothing.  I even invested in an herbal solution which is also doing nothing.  How do you cope?
I feel like I have disappeared... everything that made me happy is now a risk and I am not sure how to proceed.
Your insights would be appreciated!

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 9/6/2012 1:00 PM (GMT -6)   
It is difficult to adjust to the changing requirements of our disease. So many things change in our lives. Like you , many of the things I loved about life have slowly become uncomfortable if not impossible for me.

I assume you've tried some of the garments specifically made for extreme sun sensitivities? There are several manufactures these days. Sometimes I find it is the heat as much as the sun that is troublesome, and it is a bit easier with a constant supply of ice water.

Have you checked back with your dermatologist, or possibly consulted a rheumotologist? A rheumy will be able to treat you with other medications to get things back under control -- plaquenil is more for keeping the disease in check than it is for treating symptoms. A short course of steroids like prednisone or longer treatment with something like Imuran, Cellcept, or MTX may be called for.

I hope you find the energy to keep looking for treatment and solutions - don't let the anxiety and/or depression take over. Did you know they are actually symptoms of Lupus themselves? Anxiety/Depression are chemically controlled, it is NOT a case of "mind over matter". Thinking can't make chemically induced anxiety/depression disappear...medication can. Make sure to include these symptoms when you see a rhuemy so they can be treated!

I hope things become more manageable soon, and Welcome to Healing Well!
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Regular Member

Date Joined Jun 2012
Total Posts : 26
   Posted 9/17/2012 7:44 PM (GMT -6)   
Hi! I have both discoid and SLE too. It does suck. I have double blackout drapes on all my windows and had to move my office home. I found some great sun stuff called Neutragena Helioplex 360 and it has saved me! I used to be so photosensitive I would break out (solar uticaria) in hives and I have all kinds of rashes. Here's a link to some of them.

Your not alone. I recently changed rheumies and am doing so much better. The new rheumie put me immediately on CellCept and it has done wonders for me. Clarity is better, rashes are better, what I do have heals faster and doesn't get worse.. Love Julie ps write me anytime
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