Mandeville Model Michelle: My experience taking JAK inhibitors for Alopecia Areata

If you're one of thousands of men and women who have experienced Alopecia Areata, you'll likely be familiar with the overwhelming distress it can cause. Though not life-threatening it is certainly life-changing, but getting this sentiment across to your healthcare provider and those around you can feel like screaming into a void.

After years of self-advocating to fight what feels like lack of motivation to truly understand what's going on internally, you might consider taking things into your own hands. That's exactly what Mandeville model Michelle Wilson-Stimson did when she first heard about JAK inhibitors being trialled to treat Alopecia Areata.

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Disclaimer: This article is for entertainment purposes only and does not constitute medical advice. The views expressed are those of the interviewee and do not reflect the opinions of a medical professional. Always consult a qualified healthcare provider before beginning any treatment.

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Q: Michelle, can you tell us a bit about how your hair loss first presented?

A: Well my hair first started falling out in two little patches right at the back of my head. One side first and then the other side and it was symmetrical - two little round patches. At the time I thought it was because l'd had steroid injections in the back of my head to treat my migraines. I thought it was fine, it's just from the injection site. Anyway, over time those patches grew and grew and I noticed a couple more forming in other places. Those two patches merged together into a much bigger patch of hair loss.

Eventually I lost all of my hair on the back of my head, from ear to ear all the way down to the nape but I still had hair on top and it stayed like that for a while. Then I started getting patches on top, but I started to get patches from underneath growing back. It seems my hair doesn't really know what it's doing — it's trying to grow in some places whilst falling out in others. That's the way it's always been and that was 12 years ago. I've been in that cycle ever since. I've never, over the last 12 years had a full head of hair.

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Q: Back when you first noticed your hair loss, what healthcare route did you take?

A: I went to the doctor, just my GP and they were very blasé with me, sort of like - yeah, you've got alopecia, it's really common, there you go. I thought... right, okay. It wasn't until I started to extensively lose my hair that I went back and said, no I need something done about this, I'm going to lose all my hair. That's when they referred me to a dermatologist. The dermatologist I saw was on the NHS and again they were very blasé and it really upset me. They said 'Oh you've got alopecia, you might lose all your hair, you might not. We can give you steroid shots in the head or we can put you on a course of steroids,' but the way they treated me was just - deal with it, stop being so vain, it's cosmetic.

So, I tried steroid shots into the head - they're painful for a start, and they cause dipping because where the actual steroid goes into your skin, you can get what they call collagen collapse where your head dips in and then it turns black. You end up with black dips all over your head. So that's really unattractive, painful and the results don't last long. Yes the hair does grow back in those patches, but it falls out again. I then tried a course of oral steroids, which made me feel amazing because I had all this energy and my hair did start to grow a little bit, but not enough to warrant staying on them because they destroyed my weight — they made my body all lumpy and funny. I had a really round face and I didn't look my best. It actually causes quite a lot of anger - you get angry on them. I came off them because it wasn't a long term solution, you can't be on them long term anyway, so it just wasn't a viable option for me.

Over the years, l've just researched myself. I've had so many hair loss lotions, potions, shampoos and you think it's going to help. Different vitamins for this and that - over the years l've spent thousands on supplements and hair products just trying to get my hair to grow. l've done everything myself.

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Q: When did you first hear about JAK inhibitors for Alopecia?

A: I eventually went to see a private dermatologist - I paid to see a guy that l'd done some research on and he was really lovely. He was very kind and empathetic and completely different to the first guy I saw. He said he'd heard about these JAK inhibitors, but that he couldn't prescribe them to me because they hadn't been approved for prescription in this country. That's changed now, but back then he couldn't prescribe them... there was nothing really he could do.

When he told me about JAK inhibitors, he did say that he'd heard some people were sourcing them themselves from other countries, so I went away and looked into that. He said that if I actually wanted to do that, he would monitor and manage me on them. So I went away, did some more research, spoke to a few people that I knew through Instagram with hair loss and out of the thousands of them, two people were doing the same and they gave me the name of a pharmaceutical company they were using in India. You don't need a prescription - you just order it and they can send it overseas.

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Q: What happened when you started taking the JAK inhibitors?

A: I felt really grotty for the first week, because obviously its an immune suppressant — it actually suppresses the JAK cells in your body, which causes immune dysfunction and inflammation. Anyway, I felt awful but after about a week, they started to settle down and I felt much better.

It took about 3 months for my hair to start growing back, and I could really tell it was growing back quickly in more places than it normally would. That was really good and it grew back until nearly every part of my head had hair on it - so I thought, okay, l've kickstarted the growth process. I was on them for about a year so l stopped to see if it would make a difference, because people still don't know if stopping the JAK inhibitors means the hair falls out, there wasn't enough research. I stopped them in August last year, and by November, half my hair was missing again.

So yeah, you do need to continue to take them. I've gone back on them again, and I have started to see my hair grow - but it has taken 6 months to kickstart this time and I think that's because I stopped and then started again. It's just taken a bit longer for my hair to understand, okay let's grow again!

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Q: Did your initial success with JAK inhibitors for hair growth give you hope the second time?

A: The regrowth is not as 'all over' as it was the first time I took the JAK inhibitors - I've kind of got a fuzzy fur as I call it, growing in patches - but because last time I saw results within 3 months and this time took longer, I was thinking, they're not going to work; even these are not going to work for me now. So yeah, I got quite down about it and I was just thinking I'm going to lose all my hair. But the fuzz has started to come, so it's given me that hope back. I'm hoping that it does continue to grow and all the little patches cover up.

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Q: What had you heard about the side effects of JAK inhibitors and is there anything that could have put you off?

A: They are immune suppressants, so you have to be careful if you go near people that are unwell.

So if I'm near someone that's got a cold or flu bug, I will pick it up probably a lot quicker than most people would. They can cause things like liver damage and kidney failure but that's because they're suppressing the immune system and your body is designed to fix anything that goes wrong on a constant basis - you've got to make sure that you're keeping an eye on your organs through blood tests, making sure you're getting them regularly as well as liver function tests, kidney function tests. I'm very active myself with my own health in that I get my own private blood tests done. I order blood tests regularly and I also use a thermography scan company, so I have scans of my body as well.

I really do monitor my own health myself as much as possible. It's not that I completely cut out the medical professionals, because I do still see my dermatologist perhaps once a year - I just check in with him and tell him what I'm doing and he tells me whether to carry on. He'll always order a set of tests and as long as my blood tests say I'm okay, my liver stays okay, the kidneys stay okay, then I will continue to take the JAK inhibitors but as soon as they start to impact my body in other ways, I would rather have a healthy body than hair, so I would stop taking them.

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Q: Which JAK inhibitor do you take?

A: I take Tofacitinib and I should take a 5mg tablet twice a day. I'm really bad at taking tablets so l just take 10mg once per day — but it's much safer and better on your body to split it into morning and dinnertime. The 5mg tablets are actually a little bit cheaper l've found but they also do a Tofacitinib cream, so I actually sometimes use that as well on my head topically. It's very greasy and oily, so you've got to use it on a day when you're not going anywhere because it needs properly shampooing off - I don't often use it.

It's actually Baricitinib that's since been approved by the NHS. I know there's lots of different JAK inhibitors and they work in different cells in the body. They've done a lot of research around Baricitinib and that seems to be really good for hair loss, so that would now be my first port of call if I was just starting to look into it.

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Q: Though it's early to say, has your hair grown back the same as how it was before?

A: It's grown back different - it grows back white when it comes through. It's odd actually, l've found some patches come through like normal hair, like a baby's hair growing you know, it all grows in a dark colour and its quite soft. But normally I get white spindly hairs that grow and then they seem to change colour... It's really strange when the first hair comes through white and then following that, your hair comes through darker. But it's really common for your hair to come back really white, because there's damage to the follicle.

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Q: Based on your own personal experience, is this a treatment you'd recommend to others in your position?

A: Yeah I think I would, absolutely. Everyone that I know that's taken JAK inhibitors, their hair has grown. Some people have had full head regrowth, others have had just enough for them to be happy. But you know, you've got to be monitored - you've got to make sure that you either do it yourself and you know how to do that, like I do with my dermatologist or go through your GP. I wouldn't advise someone to just go and buy them and take them any never test their body - that's not safe.

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We'd like to thank Michelle for sharing her hair loss journey so far as well as her experience taking JAK inhibitors to treat her Alopecia Areata. We're creating a custom hairpiece for Michelle to wear alongside her hair loss treatment — so follow along for updates.