**Disclaimer – this blog article represents my own personal opinions and views and should not be interpreted as medical advice. Please consult your GP or Dermatology specialist for any personal medical advice regarding your hair loss.
I made the decision to start JAK inhibitor medication in October 2022 following a consultation with a private dermatologist. The decision as to whether or not to start the medication was a significant one. I invested a lot of time and energy in to ensuring that I had thoroughly researched the medication, including all the possible side effects, risks, and implications. I wanted to be in a position where I felt I could make a thoroughly informed decision.
This is a two-part blog. These are some of the key points that I researched and contemplated carefully during my decision-making process. I would suggest these are starting points to consider and use to stimulate further discussions with your Dermatologist if you are considering this medication as a treatment option.
1. JAK inhibitors are currently only licensed and approved for severe Alopecia Areata.
As it stands at the moment, these medications are only licensed and approved for NHS use for the treatment of severe Alopecia Areata. Unfortunately, this means that this does not currently include other types of alopecia such as androgenetic alopecia or scarring alopecia.
It is expected that the definition of “severe” Alopecia Areata will be those with at least 50% hair loss across the scalp. This is in line with a hair loss severity score called the SALT score (Severity of Alopecia Tool) which has been used in the randomised controlled trials (RCTs). The SALT score defines “severe” hair loss as those with at least 50% hair loss.
By definition, “severe” Alopecia Areata will therefore include those with Alopecia Totalis (complete hair loss on the scalp) and Alopecia Universalis (complete hair loss over the body). It is important to be aware that you will not currently be eligible for JAK inhibitors through the NHS if the cause of your hair loss is not Alopecia Areata, or you do not have Alopecia Areata which would be categorised as “severe”.
2. JAK inhibitors are not guaranteed to work.
Sadly, but expectedly, the trials for Baricitinib (brand name Olumiant) and Ritlecitinib (brand name LITFULO) show that these medications do not work for everybody.
For example, after 6 months of Ritlecitinib treatment, 3 out of every 10 patients (31%) given the highest dose had at least 80% regrowth of hair on their scalp. After 1 year of Ritlecitinib treatment, 4 out of every 10 patients (43%) had at least 80% regrowth of hair on their scalp. Of course, in addition to this, there will be those people who had a response but did not make the 80% regrowth mark.
The outcome of 80% regrowth was the predetermined primary aim of the trial and, when applied to real life, a seemingly arbitrary and subjective value. For me, it was important to consider that the JAK medication might not work and the possible implications of that on my mental health (e.g., another disappointment and “failure”). I also thought about how I might feel if a proportion of my hair grew back and it remained patchy, and whether this was favourable to being completely bald.
3. JAK inhibitors have many possible side effects.
JAK inhibitors work by blocking the activity of inflammatory pathways. In doing so, they dampen down the immune response and are therefore a type of immunosuppressive medication.
There are many possible side effects of JAK inhibitors. There are also rarer but more serious potential risks which I will cover in my next blog. This is not to say that you would get all, or maybe even any, of these side effects but it is really important to understand the potential. It is also important to note that there can be slightly different side effect profiles depending on which JAK inhibitor is used (e.g., the side effect profile for Ritlecitinib is slightly different to that for Baricitinib).
Some of the most common side effects reported in the trials (ALLEGRO and BRAVE) and by the pharmaceutical companies (Pfizer and Eli-Lilly) include:
Abnormal blood results:
Raised muscle enzymes (creatinine kinase)
Raised liver enzymes
Anaemia (low red cell count)
Neutropenia (low white cell count)
Increased cholesterol levels
Thrombocytopenia (low platelet count)
Increased susceptibility to infections:
As these medications suppress the immune system, they can make you more prone to infections. Most commonly:
Upper respiratory tract infections (e.g., cold, sinusitis)
Urinary tract infection (UTI)
Lower respiratory tract infections (e.g., chest infection)
Thrush (fungal infection)
Shingles
Cold sores
Other common side effects:
Acne
Headaches
Nasopharyngitis
Folliculitis
Diarrhoea
Weight gain
Skin problems (eczema, hives, other rashes)
Dizziness
Sore mouth and mouth ulcers
In the trials, these medications have been deemed to have an acceptable safety profile with a low incidence of serious adverse events. However, it is still imperative to evaluate the possible common side effects and serious risks and, in conjunction with a Dermatologist, determine if these are acceptable to you.
4. You can’t start JAK inhibitors immediately.
Due to the nature of these medications, it is not a case of being given them straight away if you are deemed eligible to have them. There are a number of tests which need to be carried out beforehand to ensure, as much as possible, that you are safe to start them.
The tests required before starting the medication may be subject to variation depending on your individual healthcare professional. For me, these tests included:
Bloods – full blood count, kidney function, liver function, fasting lipids and creatinine kinase.
Infection screen – Varicella Zoster, Hepatitis B, Hepatitis C, HIV, and Tuberculosis testing.
Chest x-ray
If any abnormalities are identified within these screening tests, then it might preclude you being advised that you can safely start JAK inhibitors.
For me, this was more of a consideration due to the financial implications of having these tests done privately. If treatment is being sought on the NHS, then these investigations should be part of that work-up.
5. JAK inhibitors do not provide a “cure”.
This is really important to be aware of. JAK inhibitors are a treatment option for Alopecia Areata. They are not a “quick fix” and they do not cure Alopecia Areata. Alopecia Areata is a chronic autoimmune condition where your body is attacking the hair follicles and causing inflammation which subsequently leads to hair loss. The way that I see it is that the JAK inhibitors are like a shield, protecting you from the attack that causes the inflammation and hair loss… but without the shield, you will be subject to attack again!
This means that the medications will need to be taken long-term and, possibly, for life. From my anecdotal experience and reading, it is not entirely clear whether the doses of some of these medications might be able to be reduced once the hair grows back. There appears to be a significant risk that if the medication is stopped, the hair could fall out again. There are many reasons why the medication might need to be stopped. For example, if you developed a significant side effect or complication of the treatment or if you became pregnant. This is a really important point to consider and discuss with your Dermatologist.
This was one of the biggest factors in my decision-making process. I thought really carefully about whether I would want to possibly be on medication for an indefinite period of time.
I hope that this blog serves to prompt you to think carefully about the JAK inhibitor medication. I will cover some further aspects in my next blog. I would please encourage you to like and comment below if you found this blog helpful and any suggestions of what you would like me to write about. I really value your feedback and want to make this a useful resource for the hair loss community.
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