**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 additional key points that I researched and contemplated carefully during my decision-making process. I would suggest that these are further points to consider and use to stimulate discussion with your Dermatologist if you are considering this medication as a treatment option.
1. JAK inhibitors are not recommended during pregnancy or breastfeeding.
As a female of child-bearing age and yet to have children, this was one of the biggest factors in my decision-making process. JAK inhibitors are not recommended to be taken whilst you are pregnant or breastfeeding. Whilst using JAK inhibitors, it is recommended that effective contraception is used.
This means that if you have not started or do not think you have completed your family, you might need to factor in having to pause or stop taking JAK inhibitors for a period of time whilst you get pregnant and breastfeed. This might mean that you lose your hair. Anecdotally, I have spoken to a couple of girls who have had regrowth during their pregnancies. There is some discussion in the scientific literature regarding the “protective effect” of pregnancy on autoimmune diseases. However, there is also discussion regarding the worsening of autoimmune disease with pregnancy meaning that the situation is not clear.
Ultimately, I think that if you are going to choose to take this medication and you have not yet started or completed your family you need to be prepared to stop the medication and also be prepared for the potential consequences of this.
This feeds nicely into the next two points…
2. JAK inhibitors are a long-term treatment.
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 your hair follicles and causing inflammation which subsequently leads to hair loss. The way that I see it is that the JAK inhibitors act as a shield protecting you from the attack that causes the inflammation and hair loss. Without the shield, you will be subject to attack again!
There appears to be a significant risk that if JAK inhibitors are stopped, your hair can 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 (as above) if you became pregnant.
This leads us on to the next point…
3. Whilst on JAK inhibitors, there will always be a theoretical risk of losing your hair again.
My personal opinion would be that if you are considering taking these medications, you should be as comfortable as you can be with the concept of losing your hair again. Or, at the very least, you should understand that this is a possibility. This is a significant point and one which I believe will be a reason for people choosing not to pursue treatment. Losing your hair is a deeply traumatic experience and, for someone who has already gone through the hair loss process, going through it all over again could be extremely triggering.
4. When using JAK inhibitors, you need regular monitoring by a Dermatology specialist.
JAK inhibitors are strong immunosuppressive medications. As a result, they are not without possible side effects and risks (see Part 1 for a list of some common potential side effects). For this reason, you will require careful monitoring throughout the duration of taking the medication under the specialist care of a Dermatology doctor.
For me, the monitoring has involved 3-monthly blood tests and face-to-face Dermatology reviews. This is to check my progress and ensure that the medication is not having any significant impacts on me in terms of reported side effects or abnormal blood tests (which might not necessarily manifest as side effects).
The blood tests that I have check my full blood count, kidney function, liver function, and cholesterol levels. If you are a busy person that already has a lot of commitments or, for example, you are terrified of needles and having your bloods taken – four medical reviews and blood tests per year might be something that needs careful consideration.
5. There are some more serious, long-term potential risks of using JAK inhibitor medications.
It is critical that the decision to start JAK inhibitor medication is taken in conjunction with a Dermatology doctor. This includes careful consideration of your personal medical history and whether the medication is deemed suitable and safe for you to take. The potential benefits need to be weighed up against the potential side effects and longer-term risks.
These are some of the potential serious side effects and risks of JAK inhibitor medication as per the Pfizer guidelines on Ritlecitinib (LITFULO). This list is by no means exhaustive and covers only those listed for LITFULO:
Serious/life-threatening infection – as discussed, JAK inhibitors alter the function of your immune system. This can mean that your body is less able to fight off infections.
Increased risk of major cardiovascular events and death – this means dying from a condition which affects your heart or blood vessels, for example, a heart attack, stroke, or blood clot. It has been shown that there is an increased risk of these major cardiovascular events and cardiovascular death for those taking a JAK inhibitor who are aged 50 or over and have at least 1 other risk factor for cardiovascular disease.
Increased risk of cancers – there is some suggestion that people taking JAK inhibitors might have an increased risk of particular cancers including lymphoma and skin cancer.
Blood clots – some people can be at an increased risk of developing blood clots in the legs (deep vein thrombosis), lungs (pulmonary embolism), or eyes.
Severe allergic reaction – as with any medication taken, some people can be allergic to JAK inhibitors and have a subsequent reaction.
I would please encourage you to like and comment below if you found this blog helpful. In particular, if you have any suggestions of what you would like me to write about. I really value your feedback and want to make this a useful resource.
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