Hello surferboy
Steroid creams are used for discoid lesions including on the scalp but they should be viewed as a band aid, used very sparingly and not more than a fortnight at a time. Overuse can damage the skin. Using them on the scalp is tricky and doesn't add glamour to one's appearance. I think there is also a foam version although I dont see that would be any easier. In the USA it's called Luxiq. These are prescription items and use should be supervised. I believe using steroid creams on open sores is not generally advised.
The very first line of therapy is, guess what, avoiding and protecting from UV exposure. This can often be difficult in the work place, especially if you meet the general public. If you sit under fluorescent lights, they should have plastic shades and employers should be willing to fit these as a general health and safety issue. It's not only people with lupus who need to be careful about UVR - cancer patients are another group.
You should look for a sporty type of hat with a wide brim. A baseball cap is not adequate.
Usually Plaquenil does the job very well and acts as a general disease modifier and remitter. If Plaquenil isn't enough, many lupus specialists add another antimalarial called Mepacrine in the UK. They form a powerful combination, very effective for skin and joints. There should be some obvious improvement in skin problems within a couple of months.
I suggest using a shampoo with tea tree oil as antibiotic to help avoid infection of open sores. Tea tree oil can be used neat on sores as it aids healing, but try a test patch on inner forearm first to make sure you aren't one of the very few who are allergic to it. It can ease itching. Apply it with a cotton bud/Q tip and wash your hands carefully afterwards, avoiding contact with the eyes.
A number of shampoos have photosensitising ingredients in them, some plant and fruit extracts for example. There are some shampoos that claim to have UV protection but I know nothing about their suitability or effectiveness. I would avoid products for psoriasis because they can contain photosensitising ingredients and so might some anti dandruff shampoos - ask your pharmacist
You will probably need to explain to your barber what you are suffering from and assure him it isn't in any way infectious.
Many rheumatologists are dismissive of skin troubles and don't know how to treat them anyway.Of course appearance matters so much, even if you are seriously ill.
I would want to have the diagnosis confirmed if at all possible as it's not always possible to distinguish lupus skin from other conditions just by looking, especially if the doctor isn't experienced. I'm sorry to say that this particular doctor doesn't come over as trustworthy.
Good Luck
Clare
