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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 carol on
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hi.
How does this 300mg prednisone protocol work?
how many pills are taken per day and for how many days?
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Permalink Reply by Sad_Rapunzel on
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Are you talking about Hadley King?
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Hey how long until you started to see initial regrowth?
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I’m new but i was wondering if anyone does anything extra to try to help assist in the hair growth and quality of hair? Anything related to diet, lifestyle, supplements. Does taking hair skin and nails supplements help while on a jak inhibitor?
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Just finished watching a tv show and every commercial was an advertisement for a new drug for psoriasis or eczema.Arent there multiple drugs out there already.What about Alopecia it’s been 5 years since Dr King discovered xeljanz works for AA.Still not one drug out there for us.There have been multiple clinical trials going on and still nothing in the near future.Its starting to get depressing.I tried to get in a clinical trial this week for barcitinib but was denied because I tried xeljanz even though it didn’t work for me.Anyone have any ideas why it’s taking so dam long.
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Pm me football fan....
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I could not agree with you more, Football fan. Frankly, I am getting sick and tired of every other autoimmune disease in the book being taken seriously, while alopecia areata is not. Having to deal with AA is difficult enough, and then having to deal with the idiotic comments such as, "It's only hair" are not helpful. If "it's only hair", then why are cancer-patients so grieve-stricken about losing their hair to chemo, and then why are the people around them so sympathetic to them, yet dismiss us? A cancer victim's hair loss is VERY TEMPORARY; our hair loss is often NOT! We have a REAL disease, and the hypocrisy of people pretending that we do not is appalling!
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Hi Cassidymain,
sorry dor delay in response- firstly I reckon get a full blood panel if you haven’t already- especially thyroid as many on here have thyroid issues as well and sorting out those will help a lot. I personally take biotin, vitamin d (high dose- I get deficitint very quickly and it’s hard for me to build into normal range), check iron levels before starting an iron or ferritin supplement (too much can be as negative as too little), something like tumeric or resveratol can be helpful for inflammation and may thin blood which would help with the known potential issue of blood clots (rare but happens in some on a higher dose). I personally take Allegra - 180 a day (1 pill), and sometimes take quericuin or berberine from time to time. Figure out a diet that YOUR body likes (tummy feels happy, not too tired, feel strong etc), some of the restrictive diets, I believe can be counter productive as it can be a bit toxic mentally...Go with what feels right for you as an individual.
The CYP35A is needed to metabolise Tofacitinib - so just double check any supplement via google
or doctor to ensure you aren’t using something that could counteract negatively and either reduce the effect of Tofacitinib or make it too strong for your body.
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hello frida sa not very well I realize when I shave and mow the hair that the hair remains at the same length to 1 mm and no longer grow, I also have a lot of eyebrows beard eyelashes that fall and this morning ' I have white spots on my nails again.
I think that if all fall back to new I will not support it and I would think of suicide this disease I have the impression of having a sword over the head with side effects and the possibility of falling. it's really the 2 white spots on my nails that scare meEnvoyer
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Permalink Reply by Rascalx2 on
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Im thinking there is not much put into alopecia treatment because there is not much money to be made, an example is blood pressure medication is probably used by more than 1/2 population ( guessing) but more than half the population does not suffer from alopecia. I dont know exact numbers of diseases and treatments but that is reason money is put into anything. Alopecia feels like it is just passed over like “man that sucks sorry to hear it, glad i dont have that disease”...im sorry football fan that xeljanz has not worked for you. The research that should be more invested is stem cells! If you have dna fill in missing links in your genes You basically become superhuman. You would be less likely to get any disease, stem cell treatment would grow back hair ! Stem cell treatment would eliminate cancer and all kinds of issues..,, but think of money lost on actual cures.., the money spent on cancer research is astronomical... sounds like conspiracy theory but does it?
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Permalink Reply by Lindzzej on
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I too see endless ads all the time for everything but us alopecians....very very frustrating....
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I can! My dermatologist put me on 1 non drowsy Claritin, two Nordic natural fish oil (don’t buy grocery store stuff, it’s rancid) , three nature’s bounty per day and I monitor my ferritin ct 3-4 times a year, personally my best zone is 80-90 but it’s a huge range for normal so see where you fall. Also, NO dairy (eggs, mayo, not included) and a pro and pre biotic.
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