Alopecia

We spoke with board-certified dermatologists Cathryn Sibbald, BScPhm, MD, MSc and Julien Ringuet, MD, MSc, FRCPC, along with clinical psychologist Laurie Ferguson, MD, to understand the clinical and emotional aspects of alopecia areata.

Here, we’ll address some common patient questions, including what to expect during your dermatologist visit, available treatment options and how to manage the emotional impact of this unpredictable condition.

Q: Can you explain alopecia areata in simple terms?

Dr Sibbald: Alopecia areata is a condition where the immune system mistakenly attacks hair follicles, causing hair loss. It’s a non-scarring type of hair loss, meaning the hair follicles aren’t completely destroyed. People with alopecia areata experience fluctuating hair loss and spontaneous regrowth, but it’s highly unpredictable.

Q: What should a patient expect during their initial visit to a dermatologist if they suspect alopecia areata?

Dr Sibbald: During your first visit to a dermatologist for suspected alopecia areata, the doctor will likely ask about when the hair loss started and how it has changed. In many cases, this clinical assessment is sufficient for a diagnosis. Occasionally, the dermatologist may use tools like a dermatoscope for a closer look and blood tests may be requested, either to investigate associated medical conditions or if specific medications are being considered.

Q: What are some common questions that patients often ask you about alopecia areata?

Dr Sibbald: Patients often have several questions about alopecia areata, including:

• Is it contagious? No, it’s not contagious.
• What’s the prognosis? Unfortunately, it’s highly unpredictable.
• Is nutrition or hormones linked to alopecia areata? Generally, nutrient and hormone deficiencies aren’t associated with it. Alopecia areata is more likely linked to immune disorders affecting the thyroid. Other hair loss types like telogen effluvium (hair shedding related to stress) and androgenetic alopecia (a common form of hair loss in both men and women) may involve nutrition and hormones, respectively.

Q: What treatments are available now for alopecia, and what’s in the pipeline?

Dr Ringuet: The therapy selection is based on many factors, including age, extent of disease, previous treatment, comorbidities (multiple conditions), psychosocial burden of disease, various contraindications, accessibility to care, cost and patient preference.

In Australia, common treatments for alopecia include topical therapies (substances such as applied directly to affected skin) and intralesional injections (treatments injected into affected skin).

Topical treatments include:

• Corticosteroid creams
• Squaric acid dibutyl ester (SADBE)
• Diphenylcyclopropenone (DPCP)
• Minoxidil
• Anthralin (also known as Dithrandol)

Intralesional injection treatments include:

• Corticosteroids
• Platelet-Rich Plasma (PRP)

The topical or intralesional corticosteroids need to be adapted to the site treated (more potent treatment for scalp and milder potency treatment for eyebrows). Eyelashes, although associated with a significant physical and psychosocial burden, are less amenable to topical and intralesional therapy.

As for systemic treatments, there is evidence of efficacy for oral corticosteroids (either continuous for a certain number of weeks or a certain number of days per week. Their use is limited by potential short- and long-term side effects.

Other systemic treatments used are oral immunosuppressants (such as cyclosporine, sulfasalazine, methotrexate and azathioprine) but efficacy data are limited and they need close follow-up to ensure good tolerability.

Finally, the past few years have seen emergent treatments changing the alopecia areata treatment landscape. Those include Janus Kinase (JAK) inhibitors (oral treatments that target and suppress specific parts of the immune system related to autoimmune conditions). Baricitinib is the first JAK inhibitor in Australia to be approved for use for alopecia areata by the Therapeutic Goods Administration (TGA). However, at the time of writing, it is not subsidised through the Pharmaceutical Benefits Scheme (PBS).

Q: Before a patient starts any treatment, what are some important topics they should discuss with their doctor?

Dr Ringuet: Before making a treatment choice, a thorough discussion should take place between the patient and their treating doctor on various key elements of the decision-making process including but not limited to:

• Psychosocial impact
• Comorbidities (associated diseases to be addressed)
• Efficacy data and realistic expectations in terms of the speed of onset of response and evolution of disease state
• Safety data of various treatment options
• Monitoring when necessary
• Time involvement
• Treatment costs

Q: In your experience, how long does it usually take for patients to start seeing changes from alopecia treatments?

Dr Ringuet: As for any disease, not every patient responds the same way. For all categories, there are fast responders, late responders as well as non-responders. Identifying characteristics to predict this endpoint is difficult.

Nonetheless, once the hair shaft has been targeted by the immune system resulting in alopecia, the disease treatment needs to allow for local immune stabilisation. Then for the hair bulb to regrow from its roots all the way to the surface and for the hair to further mature (passing from a vellus state (baby hair) to mature hair).

This process can take some time, but in general, when a treatment is working you can expect to see some regrowth between four to 12 weeks. The initial hairs are usually thinner and paler than mature hairs. Again, to obtain a pleasing aesthetic result, especially for people who expect long hair, this may take several months to a year or more.

Q: How can addressing the mental/emotional health aspect of alopecia make a significant difference in a patient’s overall well-being?

Dr Ferguson: There is a significant mental and emotional impact on anyone who is diagnosed with, and then lives with alopecia. It begins with waiting for and getting a diagnosis, which can be frustrating and then deeply upsetting. Then there is the daily reminder and the stages of grieving and learning to see yourself and live in a new way.

All of this requires mental and emotional reserves and involves finding new ways to think and feel about oneself. Recognising that this is a process and that it is not “merely” physical, opens pathways to get support, talk and cry through the new reality and learn ways of coping with the variety of emotions and thoughts. It is hard to overestimate the value of understanding that life with alopecia is three or four-dimensional — not just physical.

Q: What advice would you give to someone who has just been diagnosed with alopecia and is struggling with the emotional impact of hair loss?

Dr Ferguson: Before giving any advice, I would listen. Everyone’s story is a little different, and what most people need is space to tell their story to someone who can sit with the array of feelings and reactions. Witnessing how each person is feeling and thinking about their experience of alopecia is the first step. Then I would advise them to find spaces where they can talk freely — hopefully with others who understand what living with alopecia means.

Support groups are invaluable. Also, having someone close to talk to who helps them feel safe and trusting them not to minimise or try to “fix” feelings allows time and space for people to start to work out how to live their new reality. Talking is essential.

If someone is struggling to the point where they don’t want to leave the house or go out, if the depression seems to be deepening and not resolving or if the feelings are so intense that life does not seem worth living, then it is important to for them to see a trained therapist.

Q: How important is it for patients to seek both medical and mental health support when dealing with alopecia?

Dr Ferguson: From my perspective, it is imperative for someone who is diagnosed with alopecia to have both medical and mental health support. The medical aspect is self-explanatory. This is an illness that needs to be treated. But responding to the reality of hair loss, and then figuring out how to accept this reality and readjust how you see yourself, is a big task.

Having someone to turn to who is not a family member or a friend, but a trained empathetic listener who is there completely for you is an essential part of the healing journey.

There are many issues to navigate — social life, figuring out and practising going out in public, work life, romance — it makes a difference when someone is helping you develop strength and resilience, define your identity and supporting you during the hard times.

If this article has raised feelings that concern you, visit the Lifeline website or call 13 11 14.

This information should never replace the information and advice from your treating doctors. It is meant to inform the discussion that you have with healthcare professionals, as well as others who play a role in your care and well-being.

This article has been adapted, with permission, from a corresponding page on the Global Healthy Living Foundation US website which was made possible with support from Pfizer. Some content may have been changed to suit our Australian audience.

Further reading

• About alopecia areata
• Supriya’s Journey with Alopecia Areata: From Losing Her Identity to Supporting Others
• My journey with psoriasis, psoriatic arthritis and peer support
• Growing up with psoriasis: Mother and daughter share their stories
• Government Support for People with Chronic Conditions