Alopecia World
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Xeljanz (Tofacitinib Citrate): My experience on the trial
I have received a lot of interest from others on here in my involvement with the Xeljanz trials at Yale.
I thought it would be nice for everyone if I documented my progress on here.
Xeljanz is a Jak3 inhibitor and is believed to work with alopecia by turning off the distress signal relayed by the hair follicle to the attacking immune system which is the cause of the hairs falling out. Xeljanz comes in a strength of 5mg per pill and a full box contains 60 tablets. The recommended dosage for arthritis is 1 tablet in the morning and another in the evening each day.
The trial is set in a series of stages and there are requirements before participating. These include monthly visits and blood tests every 2 weeks. Dr Brett King is absolutely fantastic and is an inspiration to me. His positivity and enthusiasm gives me the much needed hope I have craved for over a decade. I have been put on a low dose to start with which is 1 tablet every other day. My dosage has now been increased to 1 tablet every day and next month it could be increased to 2 tablets per day depending on the results.
I have completed my first month and have already noticed my alopecia has stabilised . I have not lost any existing hairs. In addition to this I have seen little hairs growing in my chest area as well as eyebrows. Fingers crossed! To date, I have experienced no side effects.
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AW: Other discussions on Xeljanz / Tofacitinib
https://alopeciaworld.com/main/search/search?q=Tofacitinib
Replies to This Discussion
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Permalink Reply by Frida Rupert on
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Totally understand the agony. I hid it with a wig and only the closest people knew ( gotta say I did a pretty damn good job with eyeliner, wigs and hats!) But that was cause I knew I needed to go out and do things with my kids - get them to school, therapies, work and that if I had to talk about it with people who were not my in my inner circle I would break down and cry as talking about with even my nearest and dearest always left me in tears. It’s so hard. I am really confident. (Knowing how I felt around 3-4 months) that you need a good jab in the butt with some steriods (kenolog) or some good strong Steriods. Also the number is just a number- so what 30 mgs? This drug is one of the cleanest immunosuppressants out there - if insurance help let’s you afford it do it. (Plus steriods are cheapish). You will get it back. You will be you again- I’m gonna look for solutions to every hurdle on my side, my sisters names is Anna and I always have had a soft spot for you - also I know the agony. If the first type of steriods don’t work, try a stronger version. If that doesn’t work I wonder if there are ways to get on the other Jak that’s available via trial or insurance. In the mean time what I found soothing ( well- Valium but that’s only for the worst of worst days lol) is to listen to a guided meditation app before bed). You can get “healing” ones. They just take that rough edge off the panic this disease leaves us with. Also, my husband finally let me get a little lap dog when Alopecia hit as we have 2 big dogs. If you are an animal person I would encourage this(or cat if that’s more suitable). I call my little chi x whippet my spirit animal. Her presence is so soothing and just having a ten minute cuddle session really could help get rid of that awful feeling in my stomach. It’s a long road unfortunately - even once recovered- the mental/emotional scars linger. Sorry - again I’ve written a novel- but Anna we’ll get there.
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I have copied and pasted this message and sent it to myself so I can look at whenever I need to. I was feeling so hopeless but you have all made such a difference in the last couple of days.
I do have a very sweet doggie and two wonderful loving amazing sons who always cheer me on.
My sister took me out and we got a wig when this first hit and I wore it at first but I haven't in about 6 months. It is so uncomfortable and I feel like a fraud in it - I don't look like me at all. So I go out and work and so on with a scarf and lots of eyeliner and eyebrow pencil. I joke that I look like an ageing drag queen :)
I am going to go find a guided mediation now and yes I have a little supply of Ativan if things get really bad....
xo
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How does it feel to have your hair back? Can you remember what it’s like to be hairless or is it like a bad dream that’s distant?
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To be honest I still can’t quite believe it’s back. This disease is haunting because it does feel surreal. Growing up I had two fears - having a child with a disability and losing my hair- both happened (well the diagnosis of my son) round about the same time. For the first few weeks after I took my wig off I was actually more anxious then ever - it was kind of like I couldn’t believe that it was real that I had my hair back. I’m slowly settling into and feeling a bit like I did before. this forum was so instrumental in my recovery. I would’ve given up on xeljanz and trying to find treatments without it. In my mind I feel like if there is ways I can help people find the right solutions or treatments it’s healing for me and for them too. It’s so hard to explain to people how awfuL it is to have your identity wiped from your very body so quickly without warning. People here understand this. If I can help a few people, especially people like you, who are clearly beautiful souls, then I’ll do whatever I can. We are in this togeather. It has worked for me, and we will find a way to make it work for you. If there are hurdles we can brainstorm solutions. You are not alone. You will get your hair back - we will find a way, though it will always be there, the scars of this. But it will get better and easier. Xx
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I still have a prickly sensitivity sensation on my scalp. Will this eventually go away after taking xeljanz? I'm almost 100% covered.
I only feel this when I touch my hair or put on a hat. Almost feels like splinters. I had this feeling when I was losing my hair but I'm not, it's in full regrowth right now (because of xeljanz)
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Newjack, how long it took for you to start covering hair and are you in 10 mg?
Thanks
shad
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I was on 11mg for 3 months got to about 70%. I upped it to 16mg for 2 months and am.now about 90%. Few light spots my hair isn't nearly as thick but it will get there. I feel as confident as I did when I had my full head of hair.
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Very happy for you. Freaks me out that I seem to be the only one up to 30 mgs a day with no results whatsoever.....
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Don't be everyone's different. It is high, but make sure you just take your blood test regularly.
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Anna I added you as a friend, can you please accept and let me message you?
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