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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 mastros on
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sorry to hear that. Being for sure to 20mg would help.
Also, it could be worthy to try Xeljanz and oral Minoxidil together. It's the latest combination Dr. King suggests.
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Hi Shad, sorry it’s been such a long process for you. Was wondering- have you got results on brows, lashes and body? I think part of the issue is minaturation of the follicles given the long dormancy. My personal advice would be to increase dose up a bit, and consider trying to find betamethasone for a pulse. I know I harp on and on about betamethasone but it’s one of the more successful steriods in treating alopecia. 5 mgs two consecutive days for 4 months- then wean down. If that’s not an option then oral minoxidil could be a significant helper. It seems somewhat hard to get but I’m sure there are sources out there. The other thing, and this is a shot in the dark is trying a laser therapy.... I hate all the hype re laser hair regrowth cause it kindof feels like snake oil BUT there is some scientific backing about helping with minaturation in the follicles. There is a lovely lady on here on quite a high dose- 60 mgs I think. I’m not suggesting you go the
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Sorry - it cut me off than wouldn’t let me edit... I wouldn’t suggest going as high as 60mgs but just perhaps go up to 5 pills from Beacon to ensure you are getting the full 20 mgs if they are a tad underdosed. You clearly have some level of response- there is hair there- but it’s struggling to mature. So- the pathway is working but it’s not turning the “attack” switch off quite a bit. If you reach a point where you have had enough of xeljanz, I do think that Beacon are working on a ruxo and baricitinib generic. No harm in asking them about it and checking if it’s affordable. I think in studies on mice Ruxo had a slightly higher success rate.
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Frida: This is an interesting comment. A lot of AA patients will tell you that they have seasonal hair loss. Some has postulated that the sun exposure improved their AA. We don’t have sun most of the time where I live. I have been told to try tanning beds, but they have problems too. Any ideas for specifically how to get light exposure?
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Hi LJBMD,
there are are heaps of infrared light “helmets” for sale (pricey) but I think any red light exposure to the area in a certain wave length (circa the 640 nano wavelength) are supposed to help(check wavelength - cause there are also a lot of hair removal lasers out there!!!! Eck). I don’t think it would grow hair with AU but it may be a good side therapy to get the vellus hairs maturing and “waking” up some of the hair follicles that have been barren for so long. I actually saw something on the news last night about some people in Tasmania (Australia) having a trial for red light therapy on their head for MS. They had reported some significant immediate improvements - they didn’t mention hair growth - that wasn’t the priority (maybe not the right wavelength) but there is oodles of stuff online about how it can help with cell regeneration etc. I think the main thing is do do research before buying, so as not to get ripped off. Someone with more skills could probably make one out of a cap or hard hat. I hate promoting these kind of things as so much about hair growth is BS and will only grow your credit card debt and not your hair but I do think laser (red- must be red) light therapy does work to a degree - although only in improving growth. Re tanning beds a just be careful as many immune suppressants seem to increase risk of melanoma. It is very slight increase and maybe insignificant, given the studies usually are RA patients who’s health and risk of illness is higher anyone, but still worth a caution.
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Sorry also for typos and grammar - what is up with the edit button I wonder?
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Frida,
The forum has been broken for well over a month. We should notify the administrator of the site.
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Mastros-Frida thanks for the answer, I’ll check with my Dr. And I’ll go up 5 pills Beacon. Thanks!
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Did you guys grow hair fully on scalp first or on eyebrows/eyelashes? Or when did eyebrows or eyelashes come back for you guys?
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Hi nzhair- I noticed eyelash stubble first... but it seems very individual for everyone...
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