Scarring alopecia and SLE lupus?

[Goldie49]

I have SLE lupus, at the moment just on hydroxychloroquine. About 8 months in I think I have had my first flare. Feeling shivery, noticeable hair loss and pain in muscles. I also have a bald patch on the crown the size of a penny which the doctor said today is scarred (so presumably won’t grow back)

Is this discoid lupus? I thought you either had one or the other. Or that discoid lupus could have SLE symptoms too? I am confused.

Does anyone else have experience of this? Waiting to be referred to a dermatologist and I have steroid cream to apply, but scared it will get bigger.

Thanks for any help.

[Jmiller623]

Hi Goldie! There are many on here that use special shampoos for alopecia and have methods that prevent hair loss like less frequent hair cleansing. I’m sure they’ll chime in soon enough. I lose a decent amount in the shower on a daily basis but never had alopecia.

Sometimes docs will give you lotions and caps to use but they get messy. Best evidence to treat is for topical steroids but I think they work something like 50% of the time. Some will inject steroids into the area but from what I recall, this is even less or equally as effective as topical treatments. I think the stronger the better with regard to topical steroids and ask for the balm/ointment not just the lotion. Something like clobetasol might work.

You may also want to ask your rheumatologist about a short course of steroids or increasing the hydroxychloroquine dose if you’re still getting flares while on treatment.

I do hope you feel better soon and your flare subsides quickly. Sending many hugs your way!

[Goldie49 in reply to Jmiller623]

Thank you so much for your help and advice. I have just started a topical steroid ointment so will see how it goes.

[Goldie49]

Thanks for the advice, that’s helpful. How are you now? That sounds scary. I think the terrible thing about Lupus is it’s how unpredictable it is, that and the fact you are just managing it.

I hope you are doing better now.