Blogs Alopecia; My Way: JAK Inhibitors & why Alopecia is not just about hair My name is David and I am 34 years old, living in London. I work in marketing (desk based) and am married with 3 beautiful children. I had not experienced any form of hair loss until the age of 33. In November 2020 I began experiencing extreme rapid hair loss starting at the top of my scalp. Over the course of the next 4 months, this continued at an alarming rate and in February of 2021 I was officially diagnosed with Alopecia Areata (Universalis). In such a short space of time I had gone from having no concerns about my hair, to thinking I was just balding like many men do, to feeling like I had completely lost my identity and any feelings of self-worth. Quite quickly after diagnosis I met with a private dermatologist to discuss my alopecia (and some other autoimmune conditions). This was the first time the use of immunosuppressant medications were suggested to me as a way to treat alopecia. It was explained to me that these medications (JAK Inhibitors) were still relatively experimental and did not have approval for the treatment of alopecia in the UK, but multiple trials had proven to show quite promising results. This was a very exciting development to think that I could reverse what had happened to me. I was quite blind-sided by this – new hope! However, I was brought crashing back down to earth quite quickly, on two fronts. The first was the risks or potential risks of taking a medication which suppresses your immune system, both in the short and long term. The second was the cost. At time of writing, costs can be around £1,000 per month (depending on the dosage and where you source it). After some deliberation with my family, I made the decision to start a treatment program on one form of these medications. Initially this was a 1 month prescription, largely to understand if I had any adverse reactions. I had blood tests prior to starting and again after the 1 month course. I had shown no adverse effects so then purchased a further 2 month prescription. It was exciting to think that I had shown no adverse effects and now of course hoped my hair would begin to re-grow. Often it can take at least 3 months to see any progress. Unfortunately after the following 2 months, whilst my blood test results were still stable, I had shown no signs of regrowth. Nothing. Whilst results were not a guarantee, this was hard to accept. I really felt like I had been on a rollercoaster of emotions at this time. The confusion as to why my hair began falling out. The devastation of diagnosis and losing all of my hair. The excitement and hope of the new treatment and the heartbreak to see it wasn’t working. All of these things made it so difficult to accept my alopecia. I did not know what my reality was. With the carrot of hope in front of me – I found it impossible to live my life in limbo. I was not seeing friends or so many of my family. I was no longer doing things I loved. It was just a case of getting through the day and hoping tomorrow I would see some progress. To jump forward to today – I have continued to persevere with these medications, purchasing them privately under close supervision from a doctor and have since found a course that has resulted in complete regrowth of my hair. The hair on my head, eyebrows, eyelashes have all come back. Of course I am thrilled about this and am continuing the medication under my doctor's supervision. However, despite the results I have seen, I am not the same person as before. The trauma of what I went through and the fear that my hair could fall out again is undoubtedly something I am living with at the moment. I do think this is natural given that all of this has happened in less than 2 years. I hope that recent developments with these types of medications are a breakthrough in potential treatment for alopecia – but I am also a huge believer in that this is not a condition people should be ashamed of! Alopecia does not define someone. Easy for me to say with a full head of hair. I suppose I wrote this piece to try and increase awareness of potential treatments and the fact there is a momentum behind them to hopefully improve accessibility. But also to communicate that should someone with Alopecia see their hair return, whatever the reason, it is not simply a case of life being the same as before. This is a condition that can deeply affect an individual’s mental health; regardless of how long and to what extent it impacts their appearance. It is far more than hair! I also want to finish by saying how much I have valued the support of my local Alopecia UK Support Group. As I mentioned earlier I did struggle to accept what was happening to me which initially meant I avoided such groups, but being able to regularly speak to people who can relate to my experiences has been of immeasurable benefit.