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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 Football fan on
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It seems like jumping to 20mg a day when you have only been on 10mg for 2 months is awful fast.You might be one of the lucky ones that only need 10mg to see results.I would stay on 10mg for at least 2 more months and if nothing is happening then bump it up to 15mg and after 6 months go up to 20mg.That is just my opinion it takes time to work.
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I was tired of messing around for 6 months on 10mg, I jumped to 20 and my hair started coming in. I pulsed prednisone at the same time 300 mg once a month for 3 months. All my hair grew back, still on 20mg, 2 years later.
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Hi Carlie
I am on Xeljanz 2 tablets a day. I started noticing hair regrowth by month 2. The hair is thin and scattered. But started to grow thicker by third month. The problem is the growth is really very slow and my head hair is really thin and not strong (not similar to when I was on corticosteroids)B876D238-781B-4165-B0AF-EFA0C460D961.jpeg. Do you think it is a good idea to ask my dermatologist to put me on plus steroids to enhance hair growth ?
best Ahmad
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I was on 15 mg and Prednisone, hair came back in 2 months. Prednisone speeds up the whole process. Try 15 mg first.
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Hi Nat, how did you use Prednisone? A pulse similar to Carlie or something else?
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Hi PaulV, I took 60mg/day for 3weeks, 50mg/day for 3weeks, 40mg/day for 3 weeks. Then I had to reduce dose rather quickly due to side effects. I reduced to 30mg/day for 1 week, 20 mg/day for 1 week, 10 mg/day for 1 week and 5mg/ day for 1 week. Most side effects disappeared when I was on 20mg and below.
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Hi everyone,
I just wanted to post an update. I stayed on the 10 mg/day of xeljanz for 4 months with no progress and then increased my dose to 20mg/day since August 6 2020. Since I had hair regrowth before with corticosteriods and have AA, it is hard for me to tell if the growth I am seeing is because the xeljanz itself or if it just my hair naturally growing back since the patches had been there for a while. I still have some larger than coin sized bald patches, so I know it hasn't completely worked 100% yet. I also still have patches on my arms. I am wondering how long everyone waited to start seeing no more new bald patches on the 20 mg/day dose of xeljanz? Still trying to be patient, but I am just wondering what it looked like for others. :)
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Hi ariel015,
I'm quite new here and have scrolled through most of the pages in this thread - i noticed that you are 21 and from Canada, and i am also 21 from Canada. I was wondering if you would be open to talking to me more about your experiences with Xeljanz for alopecia and especially being 21? Most of my doctors are hesitant to prescribe it due to my age and the difficulty of accessing it in Canada. I haven't talked to anyone around my age in a similar situation to mine so I would really appreciate any input you could give me! Thank you very much :)
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Hi everyone!
So I’ve been on 4 tablets a day since November and everything has been so so good. But for like 5 days ago me and my family found a spot in my neck and of course got really nervous. Do any of u guys know why there’s a spot? I found it weird because I’m taking such a high dose.
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Permalink Reply by Rascalx2 on
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I have been on 20mgs a day for about 3 years, nothing grew back at 10mgs, strted seeing growth at 20 mgs...(i was AU) most came back but not as thick as it used to be. I still get patches , it is just the alopecia disease., but i have good coverage right now and im pretty aure its from vitamin d from the sun, was at the beach alot because time off. The patchea come and go w me, but i dont freak out as much because it has never progressed back to losing wverything, i cut my own hair and when i look at the back through 2 mirrors , its thinned out, and looks more like male pattern balness in the back, and i just say to myself as im cutting my hair “at least i have hair and eyebrows” ive just come to accept it more, i lost all first time when I was 44 yrs old. I know yur thinking yeah bro your old , so what , but this thing rocks you and was probably the most difficult thing ive ever gone through... but it has been so awesome to have hair even if its not the thick mane i used to have.., do t freak about patches theyll come and go
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Hi Arsenalauba, it can take along time to get going. I think 6 months at high dose is not unusual at all, indeed I think this is why earlier trials weren’t as successful- the patients were stopped if nothing was seen at 3 months. I would even say up to a year before you classify yourself as a non responder. I had zero growth until 5 months and then, after steroid pulse and higher dose began to see growth - at 8 months I had full coverage which thickened over time. Now my hair is quite thick, thicker then before - but that’s cause I don’t do nasty bleaching and I am very careful with it. I get some sheds, not patches, just diffuse sheds sometimes if I am stressed, but never to the point it’s noticeable to anyone but me, and I don’t get patches (but I wasn’t really a case that had defined patches. I had like one and then diffuse lose until I lost it all, so I think that’s just the type of Alopecia I suffer from, hence why I shed and don’t see patches when my disease flares. Hold tight - I know it’s hard but it’s a long journey and being a slow responder doesn’t correlate with less coverage long term for most.
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hi frida i am glad you are doing well how is your health?
at the end of october i switched to baricitinib because with xeljanz i did not have a good response from the hair my dermatologist will prescribe it i would be covered by health insurance.baricitinib has a half-life of 12:30
xeljanz 3:30
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