National Scarring Alopecia Awareness Month (Day 7, Fact 7): Some (but not all) Patients with Scarring Alopecia Have Symptoms

Some Patients with Scarring Alopecia have Many scalp Symptoms whereas Others have Few.

Certain scarring (cicatricial) alopecias like lichen planopilaris (LPP) are well known to cause a great number of symptoms such as itching, burning and tenderness.  In fact, any patient with several intense scalp symptoms should be evaluated for scarring alopecia. Symptoms are often caused by the associated inflammation
Not all scarring aloepcias are associated with symptoms and not all scarring alopecias have symptoms at all stages in the evolution of the disease.

For example, even though LPP is well known for causing symptoms some patients with LPP never have symptoms.

Consider for a moment frontal fibrosing alopecia (FFA) as well. It’s quite well known for being discovered only when a patient notices eyebrow loss. Hairline loss often may have been occurring for many years prior to a patient coming to be aware of any issue in the hairline. The lack of symptoms allows the disease to run under the radar for many with FFA. Some with FFA, however, do have many symptoms especially when LPP is also present further back in the scalp. When it comes to scarring aloepcia and symptoms, there are no rules only generalizations.

CCCA or central centrifugal cicatricial alopecia often gives “pins and needles,”  itching and tingling in the early stages of the condition. Over time, these symptoms may disappear in many despite the fact that the hair loss keeps progressing. One should never the disappearance of symptoms means the condition no longer needs treatment.

Discoid lupus (DLE), dissecting cellulitis (DSC), pseudopelade (PPB) and folliculitis decalvans (FD) are often symptomatic. Again, not all. Some with FD have no symptoms whereas others are extremely troubled by burning and itching and tenderness.

Avoiding False Assumptions when Treating Scarring Alopecia:

A common error in treating scarring alopecia is assuming that a patient who once had symptoms and now no longer has symptoms has gone from “active” to “inactive” scarring alopecia and can stop treatment. This is simply not correct. A reduction in symptoms is always a wonderful and promising sign of potential success but some scarring alopecias still proceed to cause further hair loss despite the fact that symptoms have been removed.

True “burnt out” inactive cicatricial alopecia (BO-ICA) is often without symptoms. This is a state of scarring alopecia where the disease has been quieted down completely and further hair loss does not occur. In BO-ICA, all medications can be stopped and further hair loss will not occur. In treatment induced inactive cicatricial alopecia (TI-ICA), symptoms are also not present & the disease is also stopped. However, this inactive disease state is only occurring due to the medications that are being used. With TI-ICA, the inactive scarring alopecia will once again become active if medications are stopped