Discoid lupus

Hi everyone I was diagnosed with discoid lupus about 8 weeks ago I have a bald patch about 1" in diameter and also noticed last week another swelling on scalp my dermatologist has given me demovate scalp application so I'm hoping this works. I have also noticed my fringe is getting thin and the hair on either side of my forehead. The skin doesn't look inflamed in these places. Is this normal with discoid to get thinning hair ? My ana test was negative.

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  • Hi Niamh45, hope you are well. I understand that hair thinning and loss are one of the main symptoms of Discoid Lupus. X

  • Thanks for your reply and confirming this. Just feel like I'm going mad sometimes hope you are well x

  • Hi there.

    I've used dermavate in the past and it worked for me.

    After some time of stopping using it, my scalp problems all came back and my hair has thinned a lot over the last couple of years, i'd say I've lost one 3rd of my hair tbhand the actually hair stands are thinniner but the later could be age (I'm 41).

    See what your dr advises but from my experience, I think dermavate needs to have a maintenaince dose to control the problem. I have discs of sore circle on my thighs so I use dactacort to clear them, I do have white circles of pigment loss but it doesn't bother me. As long as you use the products as a maintenance, I think you will be ok.

    Hope this helps, Claire

  • Thanks for your reply. I've been told to use dermavate daily for 3 weeks then just to apply 2 or 3 times a week so I'll just see how things go. I'm 45 and thought perhaps the thinning hair was due to menopause but it's just happened so quick. Where the hair is thinning all around the front my dermatologist said it wasn't inflamed it only inflamed around the lesions on the side of my head is this normal ? X

  • Hi Niamph45, I was diagnosed discoid lupus aged 17, now 75 and still alive and kicking! I have experienced the thinning hair and swelling on scalp (still do but only occasionally now) Apart from steroid applications a product I find helps is NIZORAL shampoo, good luck

  • Thanks for your reply I will try that shampoo. I have a good head of hear but all around the front is thinning quite fast. Thanks again x

  • I never understand why doctors tell people they have Lupus with a negative ANA. I've had hundreds of ANA tests and never once have they come back negative. You probably do not have Lupus, per se, but one of thousands of other autoimmune diseases. Scleroderma can cause red scaly patches. I have one on my face that's finally faded a bit over the years. You be thankful you had a negative ANA. For me - that would be a miracle!

  • Hey there! I was also diagnosed with discoid lupus and have noticed my hair thinning also. At times I have itchy raised places around my scalp by my neckline in the back of my head. The places thinning at the temples are not irritated or red at all. I have noticed that since I quit having my hair coloured it has gotten a bit better. I've been forced to 'embrace' my grey but it's actually a bit freeing. I haven't tried the demovate but I will certainly try it.

    Just wanted to let you know you're not alone. :)

    Tracy

  • Niahm45, What I noticed when I was diagnosed was white bald patches. Some grew back but as the scarring got worse, much didn't. Just prior to a spot, I had a strange itching, hot sensation. There were times that I found clumps on my pillow. If any of the spots are on your face, my doctor recommended getting some clear tape and covering the cream with that during the night to increase the cream's potency. It seemed to work. Discoid comes with bald spots. I have not known it to evenly thin hair. I usually protect my head with a hat or scarf. I do this almost every day as you never know when the sun will come out. My best to you.

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