JAKs – Where are we now and where might we be heading?

Janus Kinase Inhibitors (JAK inhibitors) are a hot topic within our community peer support spaces and are the number 1 repeated questions being asked to the AAAF team, so we wanted to provide an update about the current position regarding JAK inhibitor drugs as a potential treatment for alopecia areata.

Firstly, what is a JAK inhibitor and why are they being explored as a treatment option for alopecia areata?

JAK inhibitors are a type of drug that suppresses the activity or response of one or more of the Janus Kinase enzymes, also known as JAK1, JAK2, JAK3 and TYK2. JAK enzymes are known contributors to the autoimmune process. In a nutshell, JAK inhibitors could block the inflammatory pathways that occur in active alopecia areata, reducing the inflammation that occurs around the hair follicles and allowing hair to grow once again.

What is happening with clinical trials for JAK inhibitors for alopecia areata?

There are lots of stages of research, starting out with basic research and pilot studies before moving into clinical trials. Clinical trials for JAK inhibitors as a treatment for alopecia areata are currently underway across the world with at least 4 pharmaceutical companies. Clinical trials can be a lengthy process as they need to rigorously test the drugs, first to check they are safe for use and then to see if they are effective, and monitor any side effects. These trials have been in operation since 2015.

What is the position with any approval of JAK inhibitors for the treatment of alopecia areata?

The US Food and Drug Administration (FDA) approved a JAK inhibitor on 14 June 2022, and history was made, marking the first FDA-approved treatment for the condition. The drug called Baricitinib (brand name Olumiant™) for the treatment of alopecia areata,

In addition, in September 2022 the FDA accepted a New Drug Application for a JAK inhibitor called ‘Ritlecitinib’ for adults and adolescents 12 years and older with alopecia areata. The FDA decision is expected by mid-2023. AAAF will be representing the patient voice for the JAK inhibitor drugs – Baricitinib (Eli Lilly) and Ritlecitinib (Pfizer).

So the question then comes which drug will be best suited to my form of hair loss. Baricitinib is under consultation for the treatment of severe alopecia areata in adults and Ritlecitinib is under consultation for the treatment of moderate to severe alopecia areata in people aged 12 years and over. It is unlikely that it will be offered to patients with small patches of alopecia areata. We are unclear at this point what the criteria will be in terms of what is determined as ‘severe’ or ‘moderate’ hair loss.

What are the possible side effects of taking JAKs?

Many patients do not experience side effects and those who do, rarely experience serious side effects. Many side effects become less serious and frequent over time. Some less serious side effects include nausea, indigestion, diarrhea, headaches, upper respiratory tract infection, and increased cholesterol levels.

In rare cases, more serious side effects can occur, such as infection, abnormal blood counts, abnormal liver function tests, increased risk of bowel perforation, and decrease in kidney function. Source: Creakyjoints.org

Can I get JAK inhibitor drugs for my Alopecia Areata privately?

We are aware that some people are choosing to source JAK inhibitors themselves. Because JAK inhibitors are licensed for treating rheumatoid arthritis and atopic dermatitis (eczema), some dermatologists are prepared to prescribe JAK inhibitors for patients with alopecia areata ‘off-label’. This can be at a great cost for the drugs and the price will be determined by the supplier.

The next phase is listing the JAK inhibitors for the treatment of Alopecia Areata on the PBS

To understand the work involved to get a drug listed on the Pharmaceutical Benefits Scheme (PBS) you can familiarise yourself here.

AAAF is participating in conjunction with third parties, to obtain the vital inputs into the lodgements need by the pharmaceutical companies.

Managing Expectations?

It is important that anyone embarking on these treatments goes in with open eyes and realistic expectations. Whilst these JAK inhibitor drugs are a giant leap forward in the treatment of alopecia areata, they do not represent the cure that many are hoping for.

Tristan’s Sponsorship and Boxing Update.

Australian Alopecia Areata Foundation’s sponsorship program has given me the wonderful opportunity to pursue something I was keen on trying for an awfully long time, that being boxing. I have been so grateful for this experience so far, as having been diagnosed with alopecia along with other health issues, boxing has been a great stress relief for me and has had a positive impact on my overall health and well-being thus far. The first session was as expected; I was totally unprepared and totally unfit for what was to come. Although just starting off with the basics, I would soon learn how physically, and mentally challenging boxing could be even if it was just training on the pads for the most part.

Each session that would pass would become slightly more intense than before, but my form would also grow to match the increasing intensity and combinations that I would learn each week. Every session would also end with strength and conditioning exercises which would include sit-ups, pushups, planking, squatting and burpees which would leave me absolutely exhausted.

I have learnt so much in this time while boxing, even my trainer Faisal wished he had taken a video of me when I first started to see and compare how far I have come on my journey. Both my fitness, power and overall skill have improved dramatically in my time so far. Each session left me red in the face and dripping in sweat which in turn actually benefited my skin as well, which both Faisal and a few of my friends attribute to me sweating and detoxing out toxins through my pores.

It is also exciting to note the extremely positive progression in my hair regrowth during this time. At the start of my tenure in boxing, I was still relatively bald and still unsure of what direction my alopecia would head in. But through consistent visits to Sinclair Dermatology located in Melbourne, following a regime of the medication Baricitinib a day as well as steroid injections every 2 months I can happily say I am back at around 95% full hair regrowth with my dermatologist even insisting I stop the medication altogether. With this regime along with my boxing training and gym workouts, I can confidently say it all had a significant impact on improving my health and giving me remission of my alopecia.

My appreciation for being selected by AAAF is enormous and this will be an experience I will never forget.

Bianca Librandi’s Alopecia Story.

It all started when I was 17 and I had a few major life events all happen to me within a short amount of time. I was in year 12, my grandfather passed away, I contracted glandular fever and I found out then my boyfriend had cheated on me. It was a stressful time, to say the least!

I noticed a huge patch of hair at the nape of my neck missing, I was in so much shock and I had no idea what it was. I was diagnosed the next day with alopecia areata. From then until the start of 2020 the patches were tiny and manageable with steroid injections that were uncomfortable but bearable once or twice per year.

During the 2 years of lockdown, my alopecia became the worst it’s ever been. On the sides of my head had formed 2 huge patches and since then we have been trying to manage.

I’m now on prednisolone and minoxidil. I found the foundation as I felt so alone and isolated. I felt as though no one understood and if they did, as it wasn’t noticeable, it wasn’t a “big deal”. However, to me, it was a big deal and kept me up and night.

I know this treatment can keep it all under control.

I’m healing and getting better every day.

Piper’s Alopecia Story.

I was diagnosed with alopecia at 7 and a half during a pandemic lockdown. This meant we couldn’t see doctors in person immediately, but we got there eventually. 

My hair started to go in a couple of little patches on the back of my head but then I started to lose it on the top of my head too. My hairline is getting higher and higher and the hair that is left is thin and still going day by day. I don’t have eyelashes or eyebrows and no hair on my arms or legs! My skin is super soft though! 

Seeing my hair suddenly start falling out was a shock at first but at the same time I was still healthy, and my parents told me that none of this was my fault. 

People describe me as a Happy-go-lucky type of girl and say I’m such a chilled-out kid. 

I loved to wear bucket hats before I got alopecia but now, I love them even more. I wear them because I like how they look.  I don’t feel like I need to cover my head and I don’t really want to wear a wig. 

My close friends are so kind and don’t care either. 

I love hanging out with my friends, doing Taekwondo, Hip Hop dancing, playing with my dog and spending time at the beach.  

Jesse Ferguson’s Alopecia Update.

It’s the 20th of September 2022 and I want to tell you about my progress at taekwondo. There’s good news and there’s disappointing news, but mostly good.

Since the last week of July, I’ve successfully attained 2 of the 5 tags necessary to be able to grade for my black belt. I have been keeping up my weekly attendance at ATI Martial Arts Joondalup and getting new foot and shin guards.

The disappointing news is that I’ve been unwell a few times over the past 2 months and it’s meant I had to miss some of my classes, so I was unable to gain any of the 3 additional tags I needed for this Thursday’s grading. Yes, we grade…even on public holidays, may the Queen’s soul rest in peace. Then, sadly, I got the flu on my birthday 2 days ago and it’s preventing me from being at the grading even as a spectator, so it just means I’ll be working twice as hard once I’m fully recovered to earn those 3 coloured tips to put on my current red with black stripe belt.

In one class, I accidentally put my belt on inside out and it looked like it was a red belt (without the black stripe) so my instructor reminded me to wear it correctly, otherwise, I was dropping down a belt without even realising…attention to detail is part of the values´ system taught in taekwondo.

I have another chance to grade for my black belt in December, which coincidentally is when my next milestone update is…so fingers crossed I have great news to announce.

Now to the most important part: how my AAAF sponsorship has helped me on my journey with alopecia.

It took the financial pressure off my Mum, enough that she was able to set aside money for my new foot and shin guards, which were long overdue and driving my instructors crazy that I was still wearing my junior set from when I first joined at 8 years old (you can imagine how much my feet have grown since then, being 16 now!)

As you have to pay for classes regardless of whether you can attend or not, it was also less stressful knowing my martial arts were paid for, even on days I was sick and couldn’t go. I continue to benefit from doing my martial arts, from both a physical and mental standpoint; they allow me to condition my body in preparation for when I join the army once I graduate in year 12, 2 years from now. They have allowed me to focus on my body as a strong, powerful and resilient vehicle in which to live and take the focus off my scalp in an otherwise superficial society.

My AAAF sponsorship and my martial arts training go hand in hand, delivering healthy viability to stay positive and active while being social at the same time (and that is the most important thing for anyone with alopecia…To not hide away from the world.) 

Outside of ATI, Student Services at my school (Belridge Secondary College) put some AAAF brochures and posters up in the Student Services building; this is where kids go for support from their year coordinator and school psychologist and hopefully, it will bring awareness to kids who have never heard of alopecia before as well, as serve as reassurance that there is a support network should any future students develop alopecia, as I’m sure I’m not the first at my school and won’t be the last. It feels good to know that I am the one to bring awareness about alopecia and the AAAF to my school. I have also managed to accomplish the same at my weekly army cadets unit (507 Joondalup) as nobody there had ever heard of alopecia either, including our Padre (cadet title for psychologist/support staff) so they willingly put some brochures in their office and headquarters too.

I’m still yet to begin my journey on immuno-suppressant therapy as the public health system has a tediously, long waiting list between appointments at the Perth Children’s Hospital. Still, I’ve had my MVR/Rubella and Hep B booster jabs in the lead-up to starting the Methotrexate tablets. In August, I participated in a Pfizer study on people of all ages and genders with different types of alopecia. It took a week and was very detailed, answering lots of questions about diagnosis, medications, symptoms, health professionals, psychological and physical effects, support available and social impacts. I was asked to send videos and photos of myself talking about my alopecia and also any medical costs or additional factors, that prevented me from getting any help for my condition. The pharmaceutical company claims they need all these case studies to put forth their intended medication for FDA approval. Whether it works or not, it’s good to know I’ve been instrumental in the development of a future, potential cure or aid for alopecia.

And yes, of course, I made them aware of the AAAF and all the great work they do to support our alopecia community.

Victoria Gandera’s August AAAF Update.

It has been about two months since my last update. Here is how I am going with my Singing scholarship in 2022. I am very grateful to have received this as I have now moved on to learn more advanced and more difficult skills with my singing.

This semester, I have learnt more new vocal exercises, the ree reh raw rah roo one to help build my breath and the diaphragm for holding long notes. I really enjoy learning more difficult and higher-skilled exercises as it makes me feel really good when I do them well and get congratulated, as well as they can also prepare me for more difficult pieces and songs for exams. I am now doing a Grade 4 Singing Exam with the Australian Guild of Music Education. My songs are Valerie by Amy Winehouse, A Thousand Miles by Vanessa Carlton, Fearless by Taylor Swift and Colours of The Wind from Pocahontas. 

I am also very thankful for the scholarship because I can now do so much more with my skills. And something even better is my singing teacher herself, Miss Elizabeth Panov (Miss Liz). She keeps on encouraging me and helping me so that I don’t feel down when I am working on hard pieces and exercises and cannot master them as quickly as I would like to. She is an amazing teacher and I would not have anyone else on the entire planet as my music teacher.

I actually need to share something exciting with you – In my last exam that I did in June, I was recommended for the award!!! It is given only to the top few students if they do achieve grades of a certain level and I am so excited that in this exam I got the highest grade so far!!!

Thanks to this scholarship not only that I can learn so much more in my music, but I can escape from life and what challenges it throws at me when I am singing. This helps me relax, focus and calm my inner body with the things that I actually like and enjoy. I really wish for everyone to find something that helps them the way singing helps me.

Once again, thank you AAAF for the Scholarship/Sponsorship and I hope that other kids will get to enjoy my little update.

Charlie’s Alopecia Story.

I am nine years old and was diagnosed with Alopecia Areata in kindergarten at the age of five. 

From the age of five to seven, I had small patches of hair that would fall out and regrow with the compound treatment of DCP.  

At the age of eight and during the lockdown of Covid-19 slowly all my hair fell out. 

With my family’s support and the treatment of Tofacitinib Tablets from my dermatologist, my hair is slowly growing (with minor patches still falling out). 

Even though my body attacks my hair, I don’t feel it changes who I am and I still have the confidence to continue my days at school, playing with friends and participating in activities such as cheerleading, swimming and horse riding. 

Some days I wear a colourful headpiece, other days I choose one of my many colourful hats. I do have a wig to wear “just in case”. However, most days, especially around my family and friends, I choose not to cover up my alopecia and embrace who I am.

I recently joined the Alopecia support group and have been to a couple of the catch-ups close to home. I have met a lot of people like me, this has helped me feel more comfortable with having alopecia and has also helped my family with support by joining the alopecia community. 

I have been given the extraordinary opportunity to have private horse riding lessons thanks to the sponsorship of the Australia Alopecia Areata Foundation. This has helped me work on technique and has also helped with my confidence and keeps my mind healthy.  When I am older I hope to help and show other kids with alopecia that they can still be themselves and follow their dreams.

“I don’t let not having hair get to me”: Jesse’s Alopecia Story

Jesse recently received a sponsorship from AAAF for his taekwondo classes. Read his experience living with Alopecia Universalis and how participating in taekwondo has helped him through his journey.

Hello, I’m Jesse & I have Alopecia Universalis. I also have ADHD, OCD & involuntary facial and body ticks, especially when I get stressed.

At the age of nine, is when I started to notice hair loss in certain areas on my scalp. It started as Alopecia Areata. Over the course of a year, I would say all my hair had fallen out by then, including all body hair. This really affected me at first due to the fact I was the only person in my entire school with alopecia, so I stuck out & was made fun of quite often, being the butt of the joke all the time, because primary school kids just weren’t used to it.

Even a teacher told me to just shave my head and be done with it, but as anyone with Alopecia can understand, it’s not that easy to just voluntarily get rid of what little hair you have left, not knowing if it will ever grow back, so my patchy head made some people at school feel uncomfortable, mostly adults, which is ironic, as they are supposed to be equipped to handle uncomfortable situations better than kids, but this isn’t always the case.

Some kids, including my close friends, didn’t treat me any differently, but before all of that, back when I started losing my hair, I started martial arts with ATI.  At first I had trouble getting there, due to my ticks & OCD, but over time I started finding that doing it was really beneficial for me, helping me to exercise & concentrate, which took my mind off my problems.

Another benefit was when I started taking medication for my tics, OCD & ADHD, I gained a lot of weight, so when doing taekwondo I was getting a workout & this really contributed to me losing that weight again. The reason that means so much to me is that I was extremely unhappy with being overweight & never was before all of the medicine, not only that, but I didn’t feel attractive or confident, on top of feeling self conscious from having no hair, so losing weight meant a lot.

Skip to high school now, in year ten at 15 years old, nearly 16 and I don’t care about what people think and I don’t let not having hair get to me. I’ve lost all that weight that I used to have, being more active now more than ever, which I thank ATI for starting that. Now that my Taekwondo journey has come so far, being so close to a black belt and my Mum has encouraged me to never give up, even when at times, it was all I wanted to do, it’s important that I continue and do my gradings and tournaments but it’s a really expensive sport to do. My Mum said it costs us about $3,500 a year which is why we never go anywhere on school holidays and why I can’t get new sparring gear.

The AAAF sponsorship doesn’t cover equipment but it will help so much because Mum will be able to save up for foot and shin guards that actually fit me (I’ve been using the same ones since I was little) Having money issues causes a bit of stress at home and this sponsorship will really ease the financial burden for my Mum & my brother and me, so I can not feel guilty about going to ATI.

I remember when Mum couldn’t afford to pay the $50 administration/registration fee because we had no food in the house. I know that the AAAF paying for my fees for a year will not only allow me to continue doing something that builds my self esteem, keeps me fit and will help me when I join the army next year, but it will allow me to feel useful because I’m giving back to AAAF by bringing awareness to the community about the great support they provide people with Alopecia & their families too.

I’m really thankful to AAAF and look forward to updating you with my progress and milestone check-ins over the next 12 months.

Jesse Ferguson, 15, Perth, W.A.

My Alopecia Story – Lilly Cowley.

My name is Lilly Cowley. I am 13 years old and I have Alopecia

I have had Alopecia since I was 7. I remember that at the time it was very confusing. I didn’t understand why it was happening to me and I hated all the questions that I would get asked. The most common was, “Why did you shave off your eyebrows?” To me, this was a stupid question because why would any 7-year-old shave off their eyebrows? The first hair loss I had was my eyelashes and very shortly after, my eyebrows fell out. It was weird to have no facial hair. 

The uniqueness of Alopecia and the lack of knowledge have made explaining things to people very difficult. Kids can be cruel and adults can make things uncomfortable. I would love people to better understand what Alopecia is and how it affects people. 

Now that I am older and have had Alopecia for 6 years, I can handle situations confidently and with information. My eyebrows have grown back but my eyelashes kind of come and go. I don’t think in 6 years I have ever had a full set of eyelashes though. Maybe one day I will try extensions or other alternatives but for now, I embrace my unique qualities.

My family have been amazing as we have all had to go on this adventure together. My Mum is my number one supporter and without her encouragement, I may not have the resilience and determination that I do today. My Dad and brother are amazing as well. I love them so much!

My biggest passion is swimming. I love the rush of competing in big events, being part of a team and the support from my Coach, Kirk. My Club is Saints Swimming Club and it is in Cairns QLD.  I have tried other sports over the years like BMX, dance and netball, however, swimming has always been my first choice. I have recently done my first open water competition and really enjoyed it. 

It is because of the sponsorship from Australia Alopecia Areata Foundation (AAAF) that is making it possible for me to continue doing something that I love so much. It gives me the confidence to achieve amazing things. I know that I am special along with the other 1% of Australians that have Alopecia. We are not different or weird, we are UNIQUE!

Thank you for this huge opportunity and I know that it is helping my family a lot.  

Ava Lambie – My Alopecia Story

Hello, my name is Ava. I am 11 years old and from the Gold Coast. In 2020 I was diagnosed with Alopecia Areata. I felt scared and lonely. I went through several treatments like Clobex which is a type of shampoo. In my thoughts, it did not do anything but make it worse by tangling my hair so when I brushed it pulled more out. I then started another treatment called DCP which is a cream that stops my immune system from attacking my hair. The treatment seemed to work and my hair regrew.  

I went to an Alopecia support group lunch at Harbour Town Shopping Centre and met some really nice people with Alopecia. I felt supported and like I wasn’t alone anymore.  

I decided I wanted to raise money for the AAAF. I made a lemonade stand at my house and my Mum made a Facebook Go Fund Me page. I raised around $1200 which was mind-blowing.  

I went to the Alopecia Camp on the Sunshine Coast in 2021. I met so many new girls and boys with my condition. I felt happy and uplifted when I made new friends and it was just the time of my life, I didn’t feel alone anymore and I was able to be myself. 

After I thought the Alopecia was all gone it came back again this year. I began to lose hair again, most of my eyelashes on my left and some of my eyebrows. I felt insecure and heartbroken. I have tried the DCP cream again and had no luck so far, the doctors put stronger ingredients in the cream to stop it. I also have low iron; it does not help with my daily life as I struggle in class to stay awake and it is difficult to do everyday tasks. Low iron also makes your hair weak and it falls out a bit.  

Since I have had Alopecia, I have been bullied on a few occasions. I was asked all the time what had happened to me or if I had cancer. There was this boy who was just nasty to everyone except to his friends.

I believe that there are always bullies in our lives no matter if we’re tall, small, thin, wide, pretty or ugly. 

I am so excited about this upcoming camp in Sydney, I can’t wait to catch a flight with all of my new friends and hang out again. The only bad thing is I have to wake up at like 4:00am which sucks because I am not a morning person.  

I recently started Silks; it was like a dream come true watching all of the older girls do cool tricks. I am so grateful that the AAAF is helping me with my dream by sponsoring me. It’s just so kind of you and I will strive to do my best and show you my progress. 

Thanks again 

Ava Lambie 

Website Powered by WordPress.com.

Up ↑