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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 lu391 on
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me too I have brought tofacinix in the laboratory for analysis, now I'm waiting for the results,i hope well because they are cheaper than xeljanz
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Hi All,
I was suffering from Alopecia Areata from 3 years, now regrowth has started and I am getting my hairs back.
I was frustrated, tried every treatment in the past. Had more than 15 patches on all body, 1 big patch on my beard which covers almost half of the beard, 2 patches on chest, more than 10 patches on head. Now all patches are almost filled. Although I can still some hair fall on the floor.
I have written a blog with my experience with my images. I hope this will help others as well.
http://shareownxp.in/healthcare/
I would be happy to help in case of any questions.
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Hi, Everyone! I love seeing the success stories and photos on here. I am not in a good place right now and need this inspiration. I have been on Xeljanz since March of 2015. I started to see results after my doctor increased my dose to 20mg per day in late 2015. I got my lashes and brows back 100% but my scalp has been resistant. i had what the doctor called 95% coverage, but the hair was so fine, white, and thin that you could still see my scalp in many places and it was not cosmetically acceptable at all. My doctor has increased my dosage several times. She does not think that steroid pulsing will help saying that that works best on people who have not had alopecia as long as I have. ( Alopecia started in 2008 and was AU by 2010.) Unfortunately, my employer changed insurance companies in August, and it took a couple months to get pre authorization from the new provider. Luckily, the xeljanz is preauthorized now for 2 years, but because I was without medicine for 2 months, while my doctor dealt with the new insurance company, I have lost nearly all the hair, brows, and lashes I had gained. I know I am lucky because my insurance pays for me to get 40 mg per day now at no cost to me, but I'm just really sad and stressed to be starting back at square one again. Maybe my regrowth will be thicker this time. A girl can always hope.... Btw, I also take Allegra, Biotin, and I use Rogaine and Clobetasol. Thanks for sharing your sucesses with me!
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Hi merry..did the doctor mention Allegra helps? Goodluck
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Hi Merry- that’s really sad about the insurance - there are some affordable options out there that have worked for others (pm for extra details if you like)- if insurance gives you a run around again that is. Though it maybe a blessing in disguise- maybe doing a second round will push it further in terms of regrowth (it’s seems some on here get better results second go round). Let us know how you go.
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hi frida do you think your doctor would be willing to give you a low dose interleukin 2 treatment as I think this is the only way to maintain the regrowth that you got so that you could stop xeljanz. look on the internet interleukin 2 low dose alopecia areata. I had this treatment for 1 year the slight regrowth has always remained. seeing that the regrowth was only light I'm on xeljanz since March.
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Hi Kevin,
Ill definitely take him that study. To be honest I’m comfortable being on xeljanz long term- it got rid of some persistent nausea that I had as well as beinging the hair back so I do feel better day to day on it, and the only reason I would go off it would be to have another child, but I have my two kids and I had very dangerous pregnancies so that option isn’t really there for me anyway., or if I got something like cancer - and even then I’d go off for the treatment and if possible go back on again after. I would certainly like to do the interluekin 2 if it was affordable and would give me more protection from a relapse but taking my pills in the morning and evening is like brushing my teeth to me. As long as my blood results are good I feel ok being on it long term. I know some people hate the thought of being on meds for life but I kindof think of all the people out there with issues that require lifelong medication (diabetes, serious mental illness, thyroid removal, chronic high blood pressure) and I realise that in the world today many people have to take meds everyday to be healthy. For me taking my xeljanz keeps me healthy- I feel better on it as I am not depressed/ having severe anxiety like when I was totally AU, and the extra bonus is I no longer have pretty much daily nausea. But I would definitely give interluekin a go if/when it becomes available and affordable and I think my doctor would certainly be willing to look into the research for me.
i was so happy to read in your earlier message that the steriod pulsing is working and your health is managing fine on them!
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for me even as I have a complete regrowth I hope to do a low dose interleukin 2 treatment to maintain the regrowth that I obtained. the clinical trial must be finished in case of a good result it will be approved for alopecia areata in France.
I myself participated in the clinical trial in March 2017 is injections for 5 days over a period of 3 months with a two-week break. in total 4 courses of 5 days over three months with a break for 2 weeks.
there have been complete, partial regrowth but the hair is maintained long term or I think to remake cures spaced over years. because it is the first time that my hair has remained so long without relapse after stopping treatment
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this is the first try on 5 people.
I participated in the test phase 3 on all the country in France on 5 cities me it was in Paris. the results have not been released yet I think it's coming soon.https://jamanetwork.com/journals/jamadermatology/fullarticle/1876052
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