New to Discoid Lupus - scalp issues, supplement advice

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New Member

Date Joined Aug 2018
Total Posts : 1
   Posted 8/3/2018 4:53 AM (GMT -6)   
Hi everyone

I was diagnosed with discoid lupus around 18 months ago after a small rash appeared on my nose. At that point I had no other lesions on my body and I wasn’t too concerned. After the diagnosis from a UK skin specialist I was sent home with a tube of steroid cream and discharged with no particular advice other than to use the cream if and when I got a rash.

Since then the rashes have been appearing much more frequently and after a recently holiday where, after not realising how important sun protection was, I ended up with my upper back covered in angry lesions which I found quite distressing. My doctor will not refer me back to a specialist as I no longer have private health care so I find myself cast adrift with no one to turn to for advice.

Thankfully I have now found this forum and have now read up much more about this condition. I don’t think my DL is nearly as bad as some others on here but I now have spots on my scalp and I don’t know what to do – I am terrified I’m going to lose my hair.

Has anyone got any advice for getting rid of the spots on the scalp – will the steroid cream make my hair fall out??

Also does anyone have any advice about supplements? I currently have a terrible diet but I fully intend to start work on that as soon as I can.

Regular Member

Date Joined Dec 2016
Total Posts : 46
   Posted 8/3/2018 8:26 AM (GMT -6)   
Steroid cream will NOT make your hair fall out.

Forum Moderator

Date Joined Apr 2005
Total Posts : 17897
   Posted 8/7/2018 10:12 AM (GMT -6)   
Hi, Bear, and welcome! GreenBeans must not be aware that some topical steroid creams can cause hair loss. You can have hair loss but it should only be temporary.

Here is a link about it. Hope this helps and eases your mind a little.


Are you on any new medications...even orally? That can possibly cause hair loss also. This happened to me when I was put on a lot of medications but my hair did come back.

So try to relax. Maybe get a second opinion too. Let us know how you are doing because we do care about you.

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Post Edited (Sherrine) : 8/7/2018 9:45:44 AM (GMT-6)

Regular Member

Date Joined Feb 2013
Total Posts : 59
   Posted 8/7/2018 1:35 PM (GMT -6)   
Hi Bear
I also have DLE and was dx'd in 2012. I was prescribed Clobetasol (High potentcey steroid) cream for my lesions. Like you, mine presented on my nose, scalp and upper back. I had no issues with the steroid causing hair loss. The lesions themselves caused it. Clobetasol was the only thing that cleared the lesions and stopped the hair loss. Sun avoidance/protection is KEY for DLE sufferers (and SLE sufferers as well)! Sunscreen, hats, long sleeves etc...
I take Biotin and Vit D.
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