Alopecia totalis: complete scalp hair loss, causes and treatment

Alopecia is a general term for hair loss. Alopecia areata is a common condition of non-scarring hair loss that can occur at any age, usually causing small, coin-sized, round patches of baldness. In some people the loss progresses until the whole scalp is bare. The BAD patient leaflet calls this alopecia totalis. If the eyebrows, eyelashes and body hair are also lost, it is called alopecia universalis.

Non-scarring means that the hair follicles are not permanently destroyed, which is why there is always a theoretical possibility of regrowth. It affects all genders and occurs in both children and adults. Nails can also be affected in some people, with small pits or brittleness.

This page is about totalis as the severe end of the alopecia areata spectrum. The library also has a page on alopecia areata in general and on alopecia universalis.

BAD says hair loss in alopecia areata is caused by inflammation of the hair follicle, and that studies have shown the immune system mistakenly attacks the follicle. The exact reason this happens is still not fully understood. There are theories about triggers such as infections and stress, but BAD says that this link may be coincidental, as it has been impossible to identify such triggers in many people.

Alopecia areata is an autoimmune condition and has been linked to other conditions such as thyroid disease, vitiligo and type 1 diabetes, and to atopic conditions such as eczema, hay fever and asthma. If you have other symptoms, your healthcare professional may suggest further tests. There is a genetic predisposition: BAD says that in about 2 out of 10 people with alopecia areata there is a family history.

The NHS hair loss page makes the point that most hair loss does not need treatment and that some forms are temporary. Alopecia totalis is different from pattern baldness, which is usually permanent and runs in families, and from temporary loss after illness, stress or iron deficiency.

BAD says alopecia areata is normally diagnosed following assessment by your doctor, and that most patients do not require any tests to confirm the diagnosis. In certain cases, if the diagnosis is uncertain, a scalp biopsy may be considered. The NHS advises seeing a GP if you are worried about your hair loss, and to see a GP before thinking about going to a commercial hair clinic.

BAD says that if you have symptoms other than hair loss, your healthcare professional may suggest further tests, as the condition is linked with other autoimmune and atopic conditions. It also notes that alopecia areata causes sudden hair loss, and that the bald patches are smooth and not inflamed or scaly.

It is not possible to predict how much hair loss alopecia areata will cause. BAD says hair can regrow on its own over a period of months, and rarely over years, but this cannot be guaranteed and there is a risk of new patches. The chances of regrowth are better if less hair is lost at the beginning. Those with more than half of the hair lost at the beginning, or with complete hair loss at any stage, have only about a 1 in 10 chance of full recovery.

The leaflet also lists factors that make regrowth less likely: young children, a family history of alopecia areata or other autoimmune conditions, hair loss affecting the hairline at the back of the scalp, and nail disease. Regrowth that does happen may first be white, usually regaining its natural colour with time. Most people get further episodes.

Currently there is no cure, and BAD stresses that the aim of treatment is to help with the symptoms of hair loss: some treatments can induce hair growth, but none can alter the overall course of the disease.

Which treatments are suitable depends on how much hair is lost, age and general health. The BAD leaflet divides them into wigs and camouflage, treatments applied to the skin, and tablet or injection treatments.

JAK inhibitors work by blocking a group of proteins called Janus kinases that play a role in inflammation. BAD says they carry a risk of infection, and that regulators have issued a boxed warning for JAK inhibitors, based on experience with tofacitinib in other conditions, where higher rates of heart-related events, cancers, blood clots and serious infections were seen. It adds that it is very unclear whether people treated for alopecia areata face the same risks.

Topical JAK inhibitors have not been shown to be effective for scalp hair regrowth and are not available on the NHS, according to the leaflet. Alopecia UK reports that NICE has published final draft guidance recommending the JAK inhibitor deuruxolitinib for adults with severe alopecia areata. Availability changes, so it is worth asking your dermatology team what is currently funded.

BAD says wigs can be bought privately or obtained through the NHS on a consultant’s prescription, usually with a financial contribution in England, and that Alopecia UK and BAD have created a Charter for Best Practice for NHS Wigs Provision. The NHS hair loss page notes that synthetic wigs last 6 to 9 months and real-hair wigs 3 to 4 years, and that you may have to pay unless you qualify for financial help.

Without hair, the scalp is exposed. BAD advises covering bald patches with a sun block or a hat to prevent sunburn and long-term sun damage, and taking care to avoid scraping the scalp. If the eyelashes are affected, it may cause dry eyes that are sore in dry and windy weather.

The emotional side deserves attention. BAD encourages people to discuss the social and emotional impacts with a healthcare professional, who can direct you to a therapist, medication if needed, or support from others. The NHS says a GP may be able to help you access counselling and mentions support groups, including those listed by Alopecia UK.