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Aurora of the sun
New Member


Date Joined Jun 2014
Total Posts : 4
   Posted 6/21/2014 1:45 PM (GMT -6)   
I have been recently dx'd with discoid lupus, anyone out their that can chat about this, does anyone with this condition play any outdoor sports. I am a newbie and scarred to death of what it will do to me, I have creams that don't seem to work, and just started taking plaquenil (generic) about six weeks ago and have not seen any improvement.

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2608
   Posted 6/21/2014 8:57 PM (GMT -6)   
My mom was first diagnosed with discoid lupus and nothing she ever did got rid of the sores on her chest & back. She was later diagnosed with SLE & may have had that all along. Regardless, she took precautions and was never in the sun without a hat, an umbrella, and sunblock. She'd sometimes have a lot of sores & at other times just a couple. She never complained nor was she self conscious and now that she's deceased (from heart disease) I wish I had asked her if she noticed whether or not stress, an increase in outside activities, etc affected her outbreaks. As a younger woman she was a golfer, walked daily, and spent a lot of time outdoors, however she was n her '60's before she developed lupus.

Plaquenil can take two or three months to make a difference in fatigue and joint pain, so cross your fingers hand hope that it's also the case with skin lesions. Let us know please. And stay out of the sun as much as you can! Use sunblock - always. Glad you're here.

Aurora of the sun
New Member


Date Joined Jun 2014
Total Posts : 4
   Posted 6/23/2014 7:18 AM (GMT -6)   
Thank you for the reply, I am 48 and this has changed my life dramatically, and this is on my cheeks and some in my scalp. Again thanks for sharing.

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 6/24/2014 9:41 PM (GMT -6)   
Sorry to hear that you have discoid lupus and it's affecting you so badly. Plaquenil like Patty said can take anywhere from 2 to 6 months actually before you start to see improvement from the medication. You've only been on it 6 weeks, I'd wait for awhile longer and see if you improve.

I do not have discoid lupus but only SLE, I do know that taking prednisone has made a huge difference for me in the treatment of my lupus goes. Yes, steroids cause very serious side effects from them. I probably have every single horrible side affect that can be caused from prednisone. If I didn't take the stuff though I'd be dead and in urn on the mantel at our house by now.

Not knowing much about discoid lupus, I'm not sure if the steroids would help you or not, but you could ask your Doctor and see. Let us know what you find out and what your Doctor decides to do for you to help you.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.
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