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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 kevin on
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I have already been associated with oral steroids in 2009 for 1 year I had 70% growth I did not support the MTX is toxic worse than xeljanz and much less effective. I guess xeljanz is more sure than methotrexate
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the boxes in Europe are like that
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hello i took 2 tablet i feel like having heartburn. it may be psychological
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Not very excited to share this update... I had a set back this month. Things were going really well until the end of January when the left side of my head and behind my left ear got progressively thinner, and so did the back of my neck. I don't know what is going on but my head was and still is itchy and almost feels like it is sunburnt in these 2 areas. The skin looks red and blotchy. I have been shedding roughly 50-75 hairs a day. I'd say the left side and back of my head are at about 50% coverage now. I can no longer put my hair in a ponytail without these thin areas showing. I am beyond frustrated and depressed about this setback.
My dermatologist did cortisone injections in these areas and prescribed something called Fluocinonide to help relieve the burning sensation. She and I think it could be one of a few things... but at this point I don't know:
1. I had a bacterial sinus infection at the end of December/beginning of January and went on antibiotics for 10 days... which may have counter-acted the Xeljanz. But she reached out to Dr. King and he had no knowledge of any reactions between antibiotics and Xeljanz.
2. I started using dry shampoo and hairspray again for the first time since my hair loss. Apparently sometimes these products can clog pours and cause build ups that lead to rashes and/or hair loss. I think this is the most likely scenario because it is only my scalp that has lost hair, not other parts of my body. So it has to have been something external and not internal (i.e. the antibiotics I took). The hair loss is also in the exact areas where I spray the hairspray to keep down some of my baby hairs. (Side note: I've always used products like these my whole life... but maybe now Xeljanz made me more sensitive to hairspray build ups/rashes?)
3. I may have developed an allergy to some ingredient in the dry shampoo/hair spray/my shampoo/conditioner/and/or Toppik (a tinted fiber powder that I have been using to cover my thin areas).
4. Shitty luck.
Here's some pictures. If you look closely you can see that some of these areas have stubble... at this point I can't tell if they are new hairs growing back or if they are old hairs that broke off. If anyone has had a similar situation or has any advice please reach out to me. Thank you.
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Hi Katrina I’m sorry to hear about your set back. I am no doctor but my advice would be to don’t stress or get upset about it as hard as that might be but I have heard alopecia can be set off by stress. Would you not consider upping your dose just to stabilise the hair loss and maybe it will boost growth again and then go back to what dosage your on now ?
Maybe try a natural shampoo with more natural ingredients.
Kind refards
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Thank you for your kind words. I have thought about upping my dose temporarily but part of me thinks this strange rash I have is an infection that resulted from already being on such a high dose of Xeljanz and having such a suppressed immune system. So I just don’t know what to do except ride it out and see what happens...
i did just start using Exederm shampoo and conditioner which is sulfate/fragrance free and hypoallergenic. That is all I will be putting near my scalp for the foreseeable future.
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Aww ok, maybe start some meditation as I have heard it can calm your immune system. But also just try to ride it out and maybe have some biotin vitamins. Hope it is just a small set back ! Keep us updated if you can.
kind regards
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I’ve been on Xeljanz since the Spring if 2015. I’d say that 85-90% if my hair grew back. I’m on 20 mg/day but I still get episodes of hair loss where I shed at least 50-100 strands a day and lasts from a week to a couple months. I was AU since 2013. For me it seems cyclical and happens every few months. I think for me, stress is a big trigger and also foods with red 40 dye which seems really random.
There have been so many times when I’ve lost my shit and thought that the AU would come back with a vengeance and no amount of Xejanz would be able to fight it off, but surprisingly most of the hair is still holding on. I think the Xeljanz is able to help keep my AU at bay but sometimes my immune system goes into overdrive which the meds can’t tame.
It sucks because there’s always that nagging fear that it can come back and even while on Xeljanz, I always have the itching and prickling sensation and it’s like the stupid disease is taunting me and reminding me that it’s always lurking and ready to attack. Sorry it sounds so dramatic but I am so damn sick of dealing with this. Don’t get me wrong, I’m so grateful that I have access to such an expensive drug and am able to use it off-label but I feel so mentally and emotionally drained from worrying.
I’ve read that for RA patients, about 30% will respond to biologics but can have a relapse and then get better again while they keep taking the medication. I think the same could apply for our condition so please try not to lose hope. I know it’s easier said than done but the knowledge and science is getting smarter and faster.
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This is EXACTLY how I feel. Thanks for your kind words <3 it's comforting and appreciated.
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Permalink Reply by Lindzzej on
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I’ve wondered about the prickling sensation for years, what is that about? I’ve been scared to look it up for years...thought it was just me.
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Yep I had that prickling sensation too when in an "active" losing stage. I wonder if lots of people feel this. I often thought it was in my head from the anxiety but more and more I think it's actually a physical sensation. I think topical steriods really helped reduce it. I'm so sorry you have to go through this Katrina- I honestly think xeljanz will stop it getting much worse but I find so much of this battle is about the anxiety of feeling out of control.
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