Effects upon: Scalp

Some types of PEM (notably pemphigus) manifest on the scalp. In pemphigus, scalp involvement is seen in up to 60% of cases and is the first location on the body to be affected in up to 15% of cases. The scalp may also be affected in people who have pemphigoid, particularly Bullous Pemphigoid.

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The scalp is an exceptional location because of the large amount of desmogleins found in hair follicles. Desmogleins are proteins that acts as a “glue” between cells. Pemphigus causes autoantibodies to alter the action of some types of desmogleins, which leads to loss of adhesion between cells. This lack of adhesion leads to blister formation.

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The resulting lesions can manifest as erosions and crusty or scaly plaques. These can be itchy and painful to touch. Topical steroids such as ointments or lotions may help with healing, but these can be difficult to apply, especially if you have long hair. Sleep can be made more difficult as it can be hard to lay your head on the pillow. The crusty plaques can shed flakes.

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The lesions may also lead to alopecia because the “glue” that secures the hair follicles also stops sticking. Hair loss mainly occurs at the lesion sites, but hair can also be weakened near to the lesions. Hair is easily pulled out by accident when itching the scalp or using medications or products, and bald patches can develop while the disease is flaring.

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Over time, systemic treatment with steroids and/or other medications should prevent new blisters from forming and will allow any existing lesions to heal. As the autoantibodies are suppressed by treatment, the desmogleins cease to be affected, and hair ceases to be lost and can regrow.

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During a flare, it is important to keep the scalp as clean as possible to reduce any risk of infection. A gauze soaked with Prontosan (a wound irrigation solution) and left on the scalp for 15 minutes before applying topical steroids can be used. Some PEM Friends recommend using an antiseptic lotion such as Dermol 500 on the scalp.

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Washing your hair can be challenging because of sensitivity. Some shampoos can be very harsh and may irritate the scalp. Some people find that if they stop using shampoos altogether for a while it can make a difference: the itching lessens, and the hair becomes softer. Using a sponge to gently sponge hair rather than 'wash' can also help.

 

If the affected areas are accessible, and not too sensitive, then steroid ointments, lotions and shampoos can also be effective. Steroid medications such as Dermovate, Betnovate and Etrivex are normally only available on prescription.

 

Shampoos that have been recommended by some PEM Friends include: