Scalp and hair problems possibly from discoid lupus

Posted by pollyanne @pollyanne, Sep 6, 2019

I just posted on the women's health but this might be a good place for my health problem also. I was diagnosed a few years ago with Discoid Lupus although the Drs are not really sure. I have been using liquid Clobetesol on my scalp for the itching and soreness with inflammation. It is basically one area of my scalp on the top of my scalp and slightly to the left although the remainder of my scalp is also somewhat itchy. Recently a new dermatologist suggested that I try 5mg injections of the same steroid into my scalp in the irritated area. They did not help and so she increased the dose to 10mgs. Immediately I worsened and in the center I had a slight bump and then my hair fell out. It is not a huge area and I can cover it with the rest of my hair but I am remaining very sore, inflamed and itchy. I feel that my hair is becoming thinner all around this area and tonight I cannot sleep because of the itching which seems to be spreading. I am also taking Plaquinel by mouth and they tell me that it doesn't work for 3-4 months. I have been on it for about 3 weeks. Does anyone else have a similar problem and have you had any good results? Has anything helped? I am scared of losing all my hair. Thanks. Jennifer

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@pollyanne

I live in Hawaii so of course there is plenty of strong sun but I always wear a hat. I have also had a couple of inconclusive biopsies. I wonder whether I should have another one while it is so bad. Also, I haven't seen a rheumatologist for a few years and never about this problem. I have seen him in the past for Sjogrens syndrome and fibromyalgia. Thanks for your ideas.

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Hi
I am in Hawaii too and have recently been diagnosed with cutaneous lupus. How is your condition? What helped? Do you know of any lupus support groups in Hawaii?

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@trynformklmn8de

Hi
I am in Hawaii too and have recently been diagnosed with cutaneous lupus. How is your condition? What helped? Do you know of any lupus support groups in Hawaii?

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@trynformklmn8de Welcome to Mayo Clinic Connect! @pollyanne may not be on Connect anymore but we can wait and see. In the meantime, you can google for a support group. If they exist, they should show up. I will also check to see if there are other groups.
Now, a very important question. How do I pronounce your member name?

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@trynformklmn8de

Hi
I am in Hawaii too and have recently been diagnosed with cutaneous lupus. How is your condition? What helped? Do you know of any lupus support groups in Hawaii?

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@trynformklmn8de Hello, again! Have you had some time to read other discussions? I found one that seems very good “Autoimmune? Undiagnosed and Don’t Know Where To Go Next.” I’ll ask @barbfe and @catty4 if they could come and join the conversation.
Are you being seen by a rheumatologist?

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@becsbuddy

@trynformklmn8de Hello, again! Have you had some time to read other discussions? I found one that seems very good “Autoimmune? Undiagnosed and Don’t Know Where To Go Next.” I’ll ask @barbfe and @catty4 if they could come and join the conversation.
Are you being seen by a rheumatologist?

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hello yes I am being treated by a rheumatologist. My member name is " Tryin for Make lemondade" its pigeon Im trying to make lemonade out of the lemons in my life 🙂

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