Discoid lupus

[Niamh45]

Hi everyone I'm just wondering now I have been diagnosed with discoid lupus will my hair get thinner or will I just end up with a bald patch where I have flare up. Up to now I only have one bald patch. I'm really struggling at moment. Woke up today and sun shining and really don't want to go out. I'm dreading the summer😟

[kittykat68]

hi sorry to hear this i have i have subacutanous lupus so i loose my hair on top every year for 5 years but it grows back and doesnt scar , but i dont know about discoid sorry x

[Niamh45 in reply to kittykat68]

Hi kitty thank you for your reply. Must be hard for you losing your hair. Cos I'm newly diagnosed and wasn't given any information I just been using Google which is quite frightening. Thanks again x

[kittykat68 in reply to Niamh45]

see my picture ive got 3 large bald patches that ud never know are there it was hard at first i wont lie i was 41 ,single had lovellly long thick curly hair havent no more , if its not lupus hair loss then its the meds but u learn ways around it ,like i bought powders the same colour as my hair and dabbed them on my baldy bits and NOBODY at work was any the wiser , and now 5 years on im learneing more my discs on arms , havent scarred but my skin there is pigmented so i used a mousse fake tan as that also moistuises your skin as mine is soooo dry , if i can help i will feel free to ask anything i do get the same symptons as discoid i believe x

[Niamh45]

You can't see at all from looking at picture. I suppose you do learn to live with it I suppose we have to. I Have long hair always wear make up and just can't see myself going out of house with bald patches. But reading what you said there is a way round it. Do you keep yourself out of the sun ? X

[kittykat68 in reply to Niamh45]

sorry ive only just seen ur reply niamh45, i use 50 factor sunsense its the best for subacutanous lupus i got it from my dermy but now my gp gives it to me on perscription, @fighting i used to wear hats everywhere for about a year and half but i sweat to much and then that starts my itching off so, i got a choppy bob cut and did my own streaks and ud never know i have a red scaly pap about 5 ins long right on top of my head , i try not to use the bettamousse (steriod mousse) because as u know steriod cream thins ur skin so ill burn even more, i stay out of the sun between 12 and 2 as thats when its at its strongest , i havent sunbathed for 4 years but i do sit under the umbrella outside and if im actually outside with no umbrella its not until after 3 pm hope this help x

[Paul_Howard Partner LUPUS UK]

In discoid lupus where it occurs on the scalp unfortunately it often results in the destruction of the hair follicle and can subsequently leave permanent bald patches. Are you currently on any treatment?

I'd be happy to send you one of our information packs and include our leaflet about Discoid Lupus. Just send me a private message or email me at [e-mail] with your name and address.

You may find our Eclipse website useful for information on coping with sun sensitivity. It has details of a lot of helpful products etc. eclipse.lupusuk.org.uk/

[Fighting]

I was diagnosed with discoid lupus when I was in grad school. I went to the student health center. The redness and itching indicated a flare. I was told to put cortisone cream on the red spot and protect my skin with sunblock. The best one I found was Neutrogena. It absorbed well. Then I would use make-up over it. The problem was the hair. Spots would appear in my part and at the crown of my head. Putting anything there, made my hair greasy. I began a collection of hats. I have winter hats, summer hats. I make a point of never leaving the house with my head uncovered. Sometimes, I use a bandanna but that does not shade the face. Good luck Niamh45.