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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 Katrina on
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Hi here’s a monthly update on my progress.
27 year old female.
I became rapidly AU 20 months ago, with no prior history of Alopecia.
Been on Xeljanz for 17 months, mostly on 20mg/day.
Side effects: weight gain, acne, 3 colds last winter, and 1 “bacterial sinus infection” this winter that lasted over 2 weeks. I took (and am still on) antibiotics to treat it.
Recently my derm had me add Allegra 180mg 2x/day due to some research that it helps Xeljanz be more effective. (Nothing to report on that yet).
My Hair is doing well. I have one thin area on the left side of my head but no actual patches anywhere (see attached photo). The front has been growing in significantly slower than the back, so I keep it in a ponytail still to hide how uneven it really is, but I haven’t touched my wig since 12/20/17. Eyelashes are 100%, eyebrows are 95%, and body Hair seems to be 100%.
Wishing you all a happy and hairy New Year <3
Katrina
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I will try Xelijanz next month, I will start from 10mg.
Apart from AU for 30years, I have quite serious Rheumatoid arthritis for 10years.
What will be the progress when you using 10mg Xelijanz?When did you start the dose of 20mg?
Many thanks if you can reply!
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I think the way you message is by clicking on the name of the person you want to message and send them a friend request. I tried it with Anna but haven't received a response so I'm not sure if that's how it works. Also, do all of you have RA and if not how did you get your insurance to pay for it?
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No insurance for me, I have injections on Actemra for 3years for my RA.
It works for my RA. But I would like to try Xelijanz when I found it will work for my AU.
Just paid by myself for medicine.10mg dose around 650usd per month in hongkong.
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Ok- steriod pulsing - now I'll caveat this by saying DO NOT consider this without a lot of thought and doctor monitoring. Steroids can be very dangerous and can have impacts on your health in ways that can be long term. That's said my information has come from studies I read about, for the most part in medical journals and studies. Indeed a recent study using tofacitinib showed sometimes using steroids helped get the tofacitinib working, and once the steroids were weaned off the tofacitinib maintained the growth.
Basically the most successful treatment of alopecia prior to the whole JAK revolution was using steroids. Using them daily though is associated with all sorts of problems including long term adrenal suppression, increased blood pressure, significant weight gain, moon face, muscle atrophy etc etc etc. It was discovered that giving pulses of steriods, either through monthly IV pulses (pricy and a pain in the rear) of prednisone and it's deriviates or weekly oral doses of betamethasone ( either 5 mg on 2 consecutive days of the week, or .01mg per 1 kg body weight) had reasonable rates of success in inducing growth. The period of pulsing was usually around 6 to 7 months following by a gradual weaning off. The success rates in some studies were good and excellent for ~ 70% of participants who had more then 40% hair loss, many who were AU and AT.
I think dextamethozone (spelling?) is another steriod that's had some success. Currently I am pulsing with 5mgs of betamethasone 2 x a week alongside my xeljanz. My main side effect is weight gain- I've never struggled with weight gain before (had issues with being underweight before but not weight gain) and I am slightly uncomfortable with my current weight but am willing to wear that to get my hair back. Once weaned off hopefully my weight will balance out. A recent study with tofacitinib used monthly iv pulses of prednisone (read attached article) to help sped up and initiate response to tofacitinib and found that they could wean off the steriods once growth was established without the hair coming out.
Before anyone considers this please consult with your doctor. It is one of the more extreme treatment methods and is not always a safe option if you a) have heart issues b) are obese c) have dangerous blood pressure d.) have previous issues with steriods.
I have been on prednisone before and my body copes well with steriods but the pulsing has had an impact on me- weight gain - I'm still healthy but it's not fun, fatigue on non steriod days, puffy face, bloated tummy, indigestion but in all honesty it has sped up my results from tofacitinib.
My bloods are monitored bi-monthly, and so far have been good (aside from when I had my hospital visit - but all good now again). I have been hesitant to go into detail as I don't want to encourage people to do something that is risky. Please research this yourself and seek out the advice and help of a good doctor before considering it.
Other things you can do which maybe safer is to use minoxidil, lumigan, topical steroids, doc treatments, low dose naltrexone, Allegra etc alongside the tofacitinib.
Personally I think tofacitinib is the key to regrowth and these others things may assist it but alone, on AU and AT they will not work. I think combining them may improve the efficacy of tofacitinib at the onset as I think starting the regrowth is a major hurdle, once you start I think it's easier to continue growing.
Studies on using steroids to treat AA/AT/AU
https://www.ncbi.nlm.nih.gov/m/pubmed/17642661/
http://www.ijdvl.com/article.asp?issn=0378-6323;year=2004;volume=70...
https://www.belgraviacentre.com/blog/pulse-therapy-alopecia-areata-...
Using steroids to augment Tofacitinib
http://www.jidsponline.org/article/S1087-0024(17)30035-7/pdf Note use of prednisone pulse treatment.
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Katrina so beautiful!! I am so happy for you. Are you planning to stay on the 20mg a day or go down?
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Thank you <3 My doctor had said to try and stay at 20 for now. We have an appointment next month and will be checking my blood work then too.
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Permalink Reply by Jcortez05 on
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I heard the same thing !! Is alegra safe to take for long periods of time or in pregnancy?
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