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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Thank you Carlie, I think you are on the right track. I too am on LDN and minoxidil and am weaning off the steriods now. I like you have thyroid issues (only discovered when I had tests because of the alopecia) so am now (I focused on alopecia first) going to look at what I should be doing to manage the thyroid problems. I totally understand the perfect storm- I look back at my life in the three years leading up my alopecia and it was filled with stress and illness- both personally and in my immediate family. My immunologist has been the one who oversees all my xeljanz and steriod treatment. He has been such a strength for me - indeed he was the one who suggested xeljanz- he said since I didn't respond to methotrexate or cyclosporine that going through every other immune suppressant to find out which one may work would put me on a emotional and physical roller coaster and he thought that in the end xeljanz was the safest one that brought the best chance of response. When it didn't respond after three months he and I read through studies on xeljanz and alopecia and noted steriod pulsing seemed to help people get off the ground. Being an immunologist he had used steriod pulsing quite a lot in cases of Lupus and other autoimmune diseases so was not nervous in doing that with me. If I had gotten sick we would have immediately stopped. When my alopecia first hit I tried a very strict diet- no dairy, no booze, no eggs, no sugar, no soy, no grains or gluten and while I did feel quite healthy it didn't do much for my hair growth - I am still off booze, gluten and soy - but am slowly adding fruit and dairy back in ( I love milk and fruit and missed them terribly). To a degree I think diet may enhance success with xeljanz as will other complimentary treatments (minoxidil and Allegra) . I am really looking forward to reading of your success! X
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Permalink Reply by Suzie on
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So so happy for you Frida! Your hair looks fantastic! I'm sure you will never take it for granted again now that you have it back....but please don't stress about it, because that might just trigger another attack, so embrace your new hair and enjoy it!!!
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Thank you Suzie, yes you are so right. I am so grateful and realise this is a second chance that many alopecians don't get to experience due to access, cost etc. I really hope more and more alopecians do get access to these meds so they too can feel the sense of relief that I do. A few more weeks and I am going to "come out" more broadly (only close friends and family know) and I am nervous but excited about being wig free 100%!
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This is beautiful!
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Thanks Return to Life- you were instrumental in keeping me focused on the long game in the early months when I was a bit discouraged! Your insight was so valuable and your desire to help all of us in the alopecian community who want to seek treatment is priceless!
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Big hug.
We are stronger together
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Wowwww, so happy for you!!
Im in 8 weeks 10 mg and all I see is fluff, just wondering how much you increased your xeljanz ?
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Thanks Shad! I was still totally bald at 8 weeks so don't lose hope. I think at 8 weeks I went up to 15 mgs then at around three months went up to 20, for awhile I alternated 20/25mgs and now I am on 20 mgs. Once I wean off the steriods totally ( I am down from 5mgs 2 days Pete week to 3 mgs one day per week) I will see how I feel about dropping to 15 mgs. Personally my health has been great on xeljanz so I really am in no hurry to lower the dose- if my bloods and health were suffering it would be another story of course.
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Thanks for your answer, if I want to start 15 mg how should I take it? Like 1 in morning 1 afternoon and 1 evening ?
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I tended to either do 1 in morning, one lunch and one evening but it got to be a pain to remember to take them with me to work/on outings so I started taking two in the morning and one at night. Now I take 2 in the am and 2 in the pm. As long as you kindof evenly dose I think it will be alright. I think Return to Life mentioned the immune system is higher in the am so maybe skew your schedule to more in the earlier half of the day and one in the evening.
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Exactly.
That's also when u have a cold or a flu usually the symptoms are stronger in the evening.
Same reason why people with the 11mg pill take it in the morning .
Personally I always spread it evenly. Morning and evening.
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