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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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Replies to This Discussion
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Permalink Reply by Kathy on
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I'm sure I am a lot older than you and I struggled finding answers for 15+ years. My loss was not enough for Xeljanz according to my DR or the pending drugs that are in trial now but I was definitely at 40-50% loss on & and off for many years. So if you are like me; many recurring large bald spots all over my head that took years to start growing back; it was like "whack a mole", then you may as well try other avenues to pursue some success. At this point there is not a cure. But if they don't want you on that drug, you need to explore other avenues in the meanwhile. I am doing pretty awesome right now, better than ever before. I am lucky I never lost my eyebrows or eyelashes and my previously great but stick straight hair is now soft & curly and quite thick. I don't have to wear any of my extensions right now but I use L'oreal Magic Root to cover spots that sparse. Curls cover up a lot! But who knows what the future holds. I am doing everything I can for my body now and I'm guessing you are in the same place. And as I stated earlier, ferritin has a big range ( anywhere from 20-288 ng/mL) is considered "normal" so explore that further before discounting. But I don't know anything about amenorrhea or how that affects this condition so I can't speak to that. kbcod2@yahoo.com
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thank you sad_rapunzel, I’m 36 and a goof so think a modeling career is out of the picture.... but a lovely compliment.
Did Dr Bordone say why she didn’t think Tofacitinib was for you? Is it because she is unsure it is Alopecia Areata or is it because she doesn’t think the AA is severe enough to warrant aggressive treatment? Did she do a pull test? I am surprised as from all accounts she is a great doctor and more confident in prescribing Tofacitinib than most.
Just wondering if you have had all your hormones checked? To me the loss of period is a sign that something is seriously amiss. And hormones play a huge role in hair growth. Many doctors don’t run the full range of blood tests to check for hormonal issues. I know you are sick of going to doctors but there maybe a very simple solution to your hair loss if it is not autoimmune. I know it’s a really tough situation but you are very young (I know this sounds condescending- and I’m sorry I can’t articulate it better) and your whole life is in front of you. Once you sort out what is causing the hair loss and get appropriate treatment you have many many years of living where you can feel like yourself again. This is a hard mountain to climb, but keep going, you will get over this hump and can look forward to great relationships, family, adventures etc. This is not the end at all, just a shitty detour.
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Permalink Reply by Sad_Rapunzel on
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Well, first of all: No, you're not 36. Don't lie to me!:) You look a lot younger then girls who I know and who are in their 20s now. And it's not a compliments - It's an Honest bitter truth :D
she didn't do pull out test actually.. I don't know why... She looked at my scalp, but didn't go theough all of it like dr.Bruder, for example. He looked all over my head for at least 5 minutes...
She told me that she doesn't think it's AU and this is why tofacitinih is not for me, it will surpress immune system, which will do nothing for me by her opinion. she told she thinks it will hrow back itself if i stay in same wight and will it healthy, because by her opinion my hair loss was due to weight loss. right now she want to see me on my hormone replacement therapy for 3 more months(like will it do something or not), and maybe then she will prescribe spirinolactane. but c'mon... 3 more months? i have already left 2,5 years behind me! with no treatment!
every day i think that i could live with my thick long healthy hair through my entire life and no prental period, childbirth or menopause would give any serious damage to my look like it does to most women, because that's how much volume I HAD! And now... I'm crying again. Because it's impossible to live with this reality. These thinned part and see through hairs... it's disgusting for me. My life literally stopped, dear all. I'm sorry for writing this all here, I just have no relative or friend I could share it with.
And I will definetely have no boyfriend in any time soon. I always was with low self esteem, and now it's even further low...
I paid for consultation which gave me really nothing. I could pay to anybody else here for just hand on my shoulder and phrase:"it's gonna be alright! it will come back itself, just give it 1-2 years".
so i'm not only disapointed, i feel betrayed and fooled.. I made this mistake with dr.Bruder twice - money for nothing. And now this is happening again.
And this payment for One consultation is one month salary for me in Ukraine..
I'm really suicidal now.
Sorry again.. so sorry :(
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I saw dr borbone but she didnt recommend anything for me, later i had a scalp biopsy with someone else where i was dx’d FPHL. I also never thought hairloss could be a problem having such thick hair until menopause. I have seem numerous drs and all recommend transplant which scares me with shock loss etc. I do have hashimotos but i think its more hormonal or combination of both. I dont want rogaine and havent tried propecia. I dont know if those drugs xeljanz are for me, i going to research them, no one ever recommended them to me
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Hi Frida, you look wonderful !! Tell me your story ...
how long have you been taking xeljanz and how many months have you started to see results?
When did you start taking it, did you still have any hair? Did you ever increase the dosage of xeljanz?
Did you use any corticosteroids while using xeljanz? Thank you so much, if you can answer!
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Hi Carol, my first spots appeared Demeber 2016, by mid 2017 I was AU. I first was on methotrexate and then cyclosporine alongside prednisone, but no response. I started on Tofacitinib (xeljanz brand) at 10 mg per day, and I didn’t respond until 5 months later after I upped to 20 mgs (Bangladesh generic) and did a betamethasone pulse (5 mgs two consequetive days a week for 3 months). I noticed scalp vellus hair dec 17/Jan 18, and by mid 2018 had it all back. I have been very lucky - minimal side effects though weight is harder to maintain... ugh... could be hitting the mid thirties as well... I had a minor shed earlier this year but I think it was more a hair cycle thing as it regrew straight away without really impacting thickness and no spots.
Jaks require patience and sometimes need co-therapies to get them started. I take some supplements - but have reduced down to now taking reservetol, vitamin d (I struggle to stay in normal range even with high dose supplementation), biotin, Allegra (180 per day) and am trialing berberine at the moment. I do watch my ferritin as it was low when I first got patches but it has been normal now for ages without any real effort on my part. I also use minoxidil and Lattise - minoxidil gives me pimples on my scalp but I do think it helps with the thickness so I am trialing a new brand to see if it helps. The lattise is mainly for vanity now - as I like the longer length of my lashes on it...
how about you? Are you AA, AT or AU? It’s a rough path, alopecia, especially at the beginning when it kindof just hits you like a ton of bricks...
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really congrats :-) keep being so supportive and engaged to help others
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Thanks Mastros, hope you are going well with health and growth!
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frida I am in love with you, you are so beautiful and so kind your fiance has no luck.
I wish you all the happiness,
I received barcitinib 4mg of beacon I will be tested for those who tofacitinib did not work should tried baricitinib I have a regrowth of hair and I tried baricitinib.
but with xeljanz I had a good regrowth that changed my life
I did my blood tests urine everything is ok
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Thanks Kevin. So glad to hear you are doing well and growing hair. I do think baricitinib will be a game changer for some of us that haven’t responded to Tofacitinib. Let us know how you go with the baricitinib testing!
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Hi Kevin I have not had much luck with xeljanz and am going to switch to Barcitinib in a few months.Do not know anything about the dosing.Why did you switch to barcitinib if you had a good response to xeljanz?How long have you been on barcitinib and what dosage?
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hello football fan I do not have a complete regrowth it's been a year that I'm on xeljanz turkey, and 2 months tofacinix beacon my friends is under tofacinix for 4 months it covers 70% of the hair I thank beacon .
I have not started baricitinib yet because I have to test it in the laboratory,
i will try baricitinib to see if i can have 100%
my results today my change my life despite that I have a stress that I catch a disease or that my hair falls, I have all the blood tests and urinary iron all is good.
football fan if you want baricitinib 4mg of beacon it is 116 dollars.
the dosage I found on the internet is 4mg which equals 10mg of tofacitinib.
or 8mg which is 20mg of tofacitinib.
unlike xeljanz it is taken in a single shot of 4mg.
I will test it and I will give you news it will take a minimum of 1 month
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