I Am Being Treated but with No Results? The disease has progressed rapidly over the past year and I continue to lose chunks of hair. I have been on hydroxychloroquine for the past year and a half and on topical clobetasol propionate for the past year but I have seen no results. My scalp is still very soar and I have new spots that are inflamed and old ones that have died out. Should I start getting injections too? I am at despair and I feel like my dermatologists have given up on me and stop caring.
I Have Been Experiencing Central Centrifugal Scarring Alopecia for the Past 2-3 Years. (photo)
Doctor Answers 1
It's important to remember that central centrifugal cicatricial alopecia (CCCA) is one type of permanent scarring hair loss. Not all women with CCCA get an improvement in hair growth - even with the very best of treatments. Unfortunately, for most women with CCCA, the hair loss they experience is permanent and does not grow back.
With CCCA, the goal of treatment is to "stop" further hair loss not to grow back hair. Some women do get an improvement but most don't.
If you look the same after a year and a half of treatment, then it's likely that the treatments are "working." This means the treatments are working to stop your hair loss. If the treatments are not working, and your CCCA is still considered "active" you have an increased chance to lose more and more hair slowly over time.
Although only a dermatologist examining your scalp "up close" can determine if your CCCA is active, I suspect that your CCCA is still active because you are experiencing soreness. Options at this point include starting steroid injections, oral steroids, oral tetracycline antibiotics, or oral mycophenolate mofetil. Your dermatologist can speak to you about the potential benefits and side effects of these medications.
At the present time, we don't know the exact cause of CCCA and more research needs to be done.
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