Hair loss is a side effect of some chemotherapy treatments for cancer. Although this is very distressing, at least the sufferer is prepared for it and knows the hair will regrow after the chemotherapy is over. A lot of research is being carried into ways of preventing hair loss during chemotherapy, so we can hope that this problem will be solved soon.
Suddenly losing all your scalp hair out of the blue, for no apparent reason, is a frightening and distressing experience. It can happen to both men and women. Elizabeth Steel, who has written a book about her experience, says ‘When you suddenly lose all your hair as an adult, you feel immediately humiliated. It destroys your confidence in yourself in every aspect of your life. When your hair goes and self-esteem with it, your self-image is shattered.’ This condition is called alopecia totalis. If it affects the body hair as well as the scalp hair (eyelashes, pubic hair), it is known as alopecia universalis. However, the fact that it has a name does not mean that it is understood. Doctors at St John’s Institute of Dermatology in London have found a gene that is involved in some hereditary cases. In most cases it is a mystery, but the follicles are not destroyed so regrowth is always a possibility. It may start as a small bald patch of alopecia areata that extends over a few months until there is no hair left, or all the hair may fall out over just a day or two. Regrowth can occur but is not as likely as in the smaller patches of alopecia areata.

What Your Doctor Can Do about Total Hair Loss

Your doctor should refer you to a dermatologist, who may try some of the following treatments. Unfortunately, the results of the treatments are very unpredictable. A review of all the research about treatments for total hair loss concluded that all the studies so far have been unconvincing (for example, too few patients included in many of the studies), and there is a desperate need for some good, large-scale studies (Cochrane Review 2008;CD004413).
Janus kinase (JAK) inhibitors are showing great promise and are likely to be the future treatment of choice but are not widely available yet.

Minoxidil lotion may produce regrowth of hair but, as in male pattern baldness, it may take several months before any effect is seen and the new hair will start to fall out after the treatment is stopped (look at the section on male pattern hair loss).

Injecting steroids into the scalp is not suitable for the large area of total baldness, but steroid creams produce slight regrowth in some cases.

Dithranol. As in patchy alopecia, dithranol sometimes produces some regrowth, but it is often scanty.

PUVA therapy is long-wave ultraviolet light. It is painless. Some studies have shown that it produces regrowth in up to 50% of people and might work for people who have not responded to any other treatments. However, when the treatment is stopped, only a few are cured. This means that the treatment has to be continued, which has two disadvantages. Firstly, it is time consuming because between two and five sessions per week are needed. Secondly, like sunlight, it causes ageing of the skin and the risk of skin cancers.

Immunotherapy is based on the idea that, in alopecia, the hair follicles are attacked by the body’s own immune system. The treatment involves making the scalp sensitive to a chemical and then repeatedly applying the chemical. Some doctors believe this works by turning the immune system away from attacking the hair follicle, by making it attack the chemical instead. The chemicals used most often are dinitrochlorbenzene, squaric acid dibutyl ester and diphencyprone. This technique results in hair growth in 30–40% of people, but the treatment has to be given weekly for many months. The result may not be permanent, but usually lasts for at least 6 months.

What You Can Do about Total Hair Loss

The main task of anyone with alopecia totalis or alopecia universalis is a psychological one, and it is not easy. It involves working out a way of living with the condition and for this, Hairline International, the patients’ society founded by Elizabeth Steel, as well as Alopecia UK are a great help. It is important to remember that the hair follicles are not destroyed, so hair growth can occur at any time, even after many years. Steel herself now has a full head of hair.


First published on:
Reviewed and edited by: Dr Ahmed Kazmi
Last updated: October 2020

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