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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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Hi guys- sorry to yap on yet again. I realise I am posting quite frequently at the moment and I don't wanna be hogging the forum space. But I was looking in my phone today and realised that I had taken a photo of my bald noggin on December 30. I usually delete these photos almost immediately as I don't like to be reminded of my condition when going through my albums (much rather look at happy snaps of my kiddos and K9s) but I must have overlooked this one. Then I took the pics I posted recently. The difference in just over 2 weeks is amazing and I didn't realise until I looked at the photos. So for those of you who have started or recently started take heart. I've been on xeljanz since August/September and there have been many many moments where I thought I was not gonna respond. Within the first few weeks of December the eyelashes and eyebrows came back but the scalp was taking its time, then wham, hairs really started later half December and is growing thicker and faster everyday. It's pretty much 95% covered with some unevenness and a few patches struggling (but starting to come in). I hope this encourages new starters who are wondering if they are responders- it can take time guys! I've detailed my treatments in earlier posts so won't go through that again. Just hold on to hope guys! Please excuse the crappy photos- selfies of the back of the head are difficult to take! So pic one dec 30, pic two mid Jan!
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Anna, I think it will work for you too! Fingers crossed you get access to the meds and start your journey too! It will be wonderful to hear of your success! Hardest bit is the waiting but it's worth it. Even as a fuzz head who still *looks* bald to non- alopecians having fuzz on my head makes me feel so much better- more like myself!
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Just got my prescription yesterday, pills today, and will take my first pill in a few hours!!!!!
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Woo hoo! Excited for you! Let us know how you go! I hope you're a fast responder but the best advice I got from Return to Life was to kind of try and forget about at first as otherwise you're constantly looking in the mirror and since hair grows slowly anyway it becomes a bit obsessive! Also if you don't see results straight up don't give up (if you can afford not too) as it can take ages to happen but then all of sudden eyelashes come in or you notice body hair and then all of sudden it's actually happening!
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Frida wow thanks for photos- my daughter just started on Xeljanz Jan 5. What dose are you taking? keeping our fingers crossed it works for her too!
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Hi Lesley,
i do 20 mgs one day and 25 mgs the next. Soon when all the patches have a tad more growth I'll drop down to 20 mgs every day and once it's a bit longer I try and wean to 15 mgs a day. There are some people who get an amazing result at standard dose though so give that a go first. Newjack is on standard dose and recently posted a pic- he's had great success quickly and on 10 mgs per day. Some others need heaps of patience and a higher dose, particularly at onset to get things going. Hi really hope it works for your daughter. It's really hard to wait but hold onto the fact success rates are really good if you a) find the correct dose and b.) are willing to wait....
lots of good luck to your daughter!
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awesome congrats
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Thanks Patches! Are you on the meds yet? Hope you a fast responder! The waiting is the hardest bit I think!
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Yes I think so Kimmy though some seem to be a) unaware or b) not willing to prescribe it as it is new. There are heaps of docs who do and if you ask on here with your general location someone might be able to point you in the right direction. I personally go to an immunologist but I'm an Aussie. If you ask your derm take a few freely available journal articles about studies to back up your request. Good luck!
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Thank you Theresa! It's funny - when I first got my first patch I was crying about having to cut my hair to shoulder length - now a fuzzy head feels like success! Just feeling that furry feeling is quite delightful... are you on xeljanz as well?
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