Two representatives from AAAF were able to attend this year’s National Alopecia Areata Foundation Annual Conference in Miami, Florida. This event is one of the largest gatherings of people with AA in the world, and was a fantastic experience to see and speak with so many people living with condition from all across the world. One of the most attended sessions was an Ask the Experts session, where the AA community got to pitch our questions to a range of alopecia specialists, including researchers, dermatologists, and clinicians. The panel included Richard Long, Gabriela Nero, Maria Hordinsky, Brett King, and Natasha Mesinovska.
Our representatives collected the questions asked in the panel and took notes on the responses to bring them to you.
What does itching indicate?
A small minority of people with Alopecia Areata experience a light itching feeling before the hair loss, and some experience intense itching relating to hair regrowth, so the itching can indicate a change in how alopecia is progressing. However, the majority of patients do not experience this feeling.
Can antibiotics trigger or cause Alopecia Areata?
No. There haven’t been long term studies dedicated to this, but antibiotics can treat autoimmune conditions so it is not likely to cause it.
Are more cases of alopecia being found currently than in previous generations?
In 1997, around 1.7% of the population experienced Alopecia Areata. In 2010 this number was 2.1% This could be due to improvement in reporting and recording, rather than an actual increase in the number of people it affects.
How can I get Alopecia Areata in my late 60s with no prior symptoms of anything like this?
Unfortunately, that is what Alopecia Areata can do – It can occur at any age at all. Some people may have a history of one very small patch, or perhaps so small they didn’t even notice it, when they were younger. Alopecia Areata can occur in any form at any point in your life. It is very unpredictable.
Does taking steroids or other current treatments impact use of JAK inhibitors when they become more widely available?
No. Attempting one treatment option shouldn’t impact other treatments down the track.
Do steroid injections affect children’s growth rate?
It’s unlikely. Injection amounts are very low compared to oral treatments which are used for conditions like asthma and allergies, and those treatments have not been found to have ongoing impact on a child’s growth. Always consult with your doctor to talk about what the best option is for you and your child.
Has Alopecia Areata been linked to hormone levels and could this impact treatments?
There has never been any consistent link proven in the causation, though it’s not uncommon to hear of alopecia changing during periods of extreme hormone changes, like pregnancy. Medications which change hormone levels do not regularly have an impact on Alopecia Areata.
Are there any associations between Alopecia Areata and vaccines?
There has been no evidence that vaccines are related to Alopecia Areata.
There are a lot of myths about vaccinations. The only responsible studies looking at whether vaccines cause autism found that they did not. In countries where skepticism of vaccines is high and rates of vaccination is low, diseases like polio are seeing a comeback. There is decades of data showing that vaccines are safe. This information has been scrutinized at the highest possible level.
What is the purpose of JAK1 and JAK3 enzymes and do we need them in the body?
All JAK enzymes have a role in mediating biology, primarily transmitting signals to various types of cells. We do need them – There are some immunological conditions where JAK enzymes are completely absent from the body, which cause severe sickness.
The JAK inhibitor drugs which are currently being trialed for Alopecia Areata do not completely stop the function of JAK enzymes, but instead adjust the level of the reaction, aiming to bring them down to where the hair loss symptoms may be treated while maintaining the healthy bodily function. Ongoing clinical trials are being undertaken to understand the dosage requirements to meet this balance.
Do JAK inhibitors have positive impact on lashes and nose hair?
It is still early in the clinical trial process, so it is not possible to give concrete data yet. Scalp regrowth seems the most likely to respond to oral JAK inhibitors, and rare to see regrowth on brows and lashes on their own without some scalp regrowth. Clinical trials within Australia using a topical JAK inhibitor treatment did show regrowth on eyebrows, but was not tested on lashes and nose hair.
Have clinical trials with JAK inhibitors shown signs of improvement with nails, psoriasis and eczema?
Yes, yes, and no. People with Alopecia who experience nail pitting have found improvement in their nail growth while on oral JAK inhibitors and JAK inhibitor treatments are already being used to treat psoriasis. Eczema is quite a different condition and is not improved by JAK inhibitor treatments.
Many patients on JAK inhibitors had relapses in their hair loss after coming off the drugs. Are there studies which have moved to a lower dose rather than stopping the drugs entirely?
Further study is needed to find out exactly what dosage options are available for long term hair regrowth. It looks at this stage that some people will need maintenance dosages, possibly at lower levels.
For patients considering using JAK inhibitors – is there long term safety concerns with suppressing these enzymes?
Side effects such as lowered white cell count, lower platelets, or aneamia, may be found using JAK inhibitors. As clinical trials move forward we will find out more and gather more data about risk factors of these treatments. Safety is the highest priority.
Is there any work being done on the microbiome and association with alopecia?
Microbiome refers to relationships between microbiology and the patient. Studies are particularly looking into relationship between gut health and Alopecia Areata (AA). No large scale longitudinal studies have been completed, but preliminary mice studies show that manipulating gut microbiome using antibiotics has prevented the development of AA.
Have there been any supplements proven to improve Alopecia Areata?
Vitamin D, Zinc and Feretin have been found clinically to be related to hair health, but are not “cures” to Alopecia Areata. In general it’s important to make sure you have the right amount of vitamins and minerals. Over using supplements can be damaging, so get tested and work with your doctor to find out what is best for you.
What is the impact of diets such as gluten free and paleo on autoimmune conditions?
Many popular diets which exclude a food group are claimed to result in improvement in Alopecia Areata. Studies have been undertaken, and there is no evidence in this.
Good health and healthy eating is always encouraged, but it is not the tool that is going to keep you from getting alopecia. There are environmental factors in alopecia and having good health is excellent, but should not be considered a ‘cure’ or necessarily a treatment for Alopecia Areata. If there is a dietary change you feel your body needs you to make, speak to your doctor and do so, but it is encouraged not to expect a change in your alopecia.
Alopecia areata is a very complicated condition, and imposing very strict dietary measures can have an overall negative impact on general and mental health.
Note: No higher incidence of caeliac disease and alopecia have been found in current studies.
Is depression more likely for people with Alopecia Areata?
Recent studies have found that depression in average population is 20%, in Alopecia Areata community it is 29%. Anxiety rates are also high, indicating mental health support is needed throughout the alopecia journey.
Important not to think “oh I have alopecia so having depression is normal”. This is not the case. Depression is serious, real, and most importantly treatable. It takes time, but there is help available. Depression or anxiety is certainly not the cause of alopecia.
Do interventions help people with alopecia in terms of negative behaviours like substance abuse, depression and suicide?
Interventions do make a difference. There is information on the AAAF website about what to look for in yourself or a loved one if you are worried. The reality is that this is not just are you feeling bad today – Depression is a physical condition. The environment, neurochemistry, these all have an impact.
There is always a hesitation about asking someone, “are you thinking about suicide”, but the studies have shown that if you’re worried, you’re not going to be introducing that thought. It’s important to talk about these things and it’s a very important part of preventing suicide to have these conversations. Trauma is real, and alopecia can be an emotional trauma. But we can make a difference in others lives. Speak to your family, friends, a teacher, doctor, religious or community leader.
In 2017 a study was done on two groups of people with alopecia who were not undergoing treatment, where one group who underwent weekly mindfulness and mental health training, received consistently better results with relation to anxiety, depression, mental health.
If you feel you or a loved one needs mental health support, crisis support services can be reached 24 hours a day: Lifeline 13 11 14; Suicide Call Back Service 1300 659 467; Kids Helpline 1800 55 1800; MensLine Australia1300 78 99 78; Beyond Blue 1300 22 4636.