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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 Juan on
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Wow happy for your son!
ok so 6 months, I guess I'll just wait a bit more with 10mg a day, Ive been on it for 6 weeks. will stay with 10mg for at least 12weeks and then see.
how was your sons recovery process? it was suddenly all compressed at the ende? or it was just a well spread over time, progressive day by day minor improvements?
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He decided to shave his head in October and began Xeljanz in February. After shaving his head he wore a hat whenever he was around people including me. I do recall one Dr visit in May (?) where he removed his cap and I saw spots of hair growth of about an inch or half inch in length which made the Dr, and me, very happy.
If you want specifics you can click on my name and review my posts as I catalogued his progress as it was happening.
Good luck. Persevere. It's tough and everyone seems to respond differently.
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Hello ive been 6 weeks on Xeljanz. Ok I think is helping me dramatically only with 10mg a day. My head is filling up with both dark and white hair but mostly white, easy to see in real life I will try to get a pic.
Ive changed nothing about my lifestyle, drinking beer as much as I want to, smoke weed regularly and cigarrettes ocassionaly but lately a lot
I was AU during 6 yrs, the only thing thats got me thinking is that for pure coincidence, sine 2 months before I started with Xeljanz I was growing hair naturally without any reason, then I started xeljanz and it has continued nicely, but How do I know now if its xeljanz or just natural regrowth? so How do I know if I am taking the right dose for xeljanz to influence on my system? maybe if I increase to 15mg I can lift pigmentation and growth speed? or once one dose is working rising it wont change anything other than losing the few pills I had left for this year?
Cheers people
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I am still weighing out the options to use Xeljanz or not (Currently trying a bunch of other solutions such as probiotics, vitamin d and a, and lowering my inflammation which is pretty high)
Has anyone here had any bad or even normal side effects to Xeljanz? How is it for you guys? My parents really don't want me on it. And I don't know if I do either as a 22 year old guy. Can't take an RA medicine forever
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My side effects were minimal and I actually feel healthier on it then off. I used to get bad and unexplained nausea through my twenties and into my thirties. That disappeared on these meds. Otherwise I got some indigestion for the first three weeks, acne that calmed at 3/4 months, and weight gain which has pretty much resolved with upping my exercise and not being too much of a piggy. Re staying on meds forever- I’d like to wean down to a minimal dose but as of now I am happy to be on them as long as my blood results and health are good. That could be indefinitely which doesn’t really bother me. Can I ask what your parents concerns are in regard to the meds?
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Hey guys - So I have been on 10mg per day for the last 2 months and have seen zero results (not a single hair). I decided to up the dose to 20mgs a few days ago. I will stay on this dose for at least 3 months before throwing in the towel. Based on my conservation with Dr. King it seems like 1/3 of the population responds at 10mg, 1/3 responds at 20mg, and 1/3 never responds. Really hoping I am in the 20mg club, but I am not holding my breath. I am definitely starting to lose some hope. Will let you guys know what happens in a few months.
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Hi NYGuy,
2 months is way too early to judge. Don't lose hope. Most people seem to start seeing results around month 4-6. Based on the posts on this forum, 15mg seems to be the avg response dose. I only say this because each 5mg pill is expensive, so going to 20mg/day instead of 15mg is a big jump in cost you may not need. I know it's hard, but try to stay positive and be patient. Hang in there!
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Hi NYguy, can I ask how long have got had alopecia and what type of alopecia have you had?
The average rate xeljanz is about 12 weeks so month 4 is crucial, don’t give up so early
The guy who started this thread responded from month 7 and now has full regrowth. And some people have tried steroid pulsing or predisilone along side xeljanz to quick start it.
Maybe that is an option you can explore
Kind regards
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I have universalis and was diagnosed about 1 year ago. No personal history with alopecia before diagnosis and no family history. I recognize that there are people who have taken longer to show significant regrowth. However, I think it is a little disingenuous to say they didn’t show any signs of improvement before the 4 month mark (most responders see vellus hairs within a couple of months on the appropriate dose). I can financially support the medication cost so I will definitely keep on it. It’s just a little scary given there are no more options after you increase to 20mg.
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Stay on it NY guy! It was 4/5 months for me- and yes- that’s even vellus hairs though in full disclosure I had a small thumb nail size patch that didn’t fall out on my scalp. I have had full regrowth. My hair now is a bit thicker then before (perhaps biotin and minimal styling related?), my lashes and brows and body hair all back too. I had to use steriods to get off the ground but am doing great going on 7/8 months since I weaned offf those. I do think some do respond straight away, some take time and a minority (about 20%) do not respond. I read a study when one guy got nothing for 8 months, then 18 months later when the study ended he had most of it back.
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Permalink Reply by Rascalx2 on
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Awesome frida, my growth has never been what it was before i lost it, i am thin on top , it used to be so thick pre alopecia. Im happy w results though. I was in a crowd of people the other day and was remebering how self aware and vulnerable i was when i had AU. It would just consume my everyday thoughts of how freaky I felt. I m really grateful for this treatment, dont know hiw long it will last or how long i can continue to take xeljanz, but im staying on this path for now, for thise of you afraid to take xeljanz ... why? If you experience negative side effects then stop taking it...
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