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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 Newjack on
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Thanks, my beard is still shedding but I think it's hair from when my Alopecia was still active. My hair will never be 100% but I shouldn't complain, this is as close as it gets. And I came to terms with that. But I'm so thankful for this drug and I hope everyone has the same response I did.
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The best! So overjoyed! Even with success it is a hard road but like you I am grateful for jaks and desperate for a solution for non- responders
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Permalink Reply by Rascalx2 on
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Dude you have like full on growth! I been taking xeljanz 20 mgs for over a year and it started fallin out in dime sized and half dollar sized circles, it doesnt seem to be falling out anymore but is not growing in either.. my hair will never be as thick as it once was.. scalp is visible and almost comb over, i want to go shorter but the cheetah print will be so noticble in the back i start to feel stuck of what to do, anyone have suggestions?
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I am on 11mg xr and 1 5mg tablet. I had growth from taking the one XR tablet but wanted to speed it up.
I honestly do not know what I did to help it. I am on keto, but was also on keto when o first lost my hair. The only thing I can suggest is what Frida did, and that's steriod pulsing.
I had a few spots in May/June and I got steriod injections and they filled in immediately. My beard still has spots but it's pretty long and covers it up.
I will most likely go down to 1 pill a day November. I am pretty scared to do so but I am hoping by then Alopecia is well asleep and going down 5mg won't freak my body out.
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Do you guys know when xeljanz will be standard FDA approved regular treatment for anyone with alopecia?
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Hi,
Approval from what i have read is around 2020/2021 but it won't likely be xeljanz but something on them lines i hope.
Kind regards.
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Hi, everybody! I am hoping someone will be able to address my concern.I am AU. I have been on xeljanz since March of 2015. I am a slow responder. I have all my lashes and brows back. I have full coverage on my scalp
but my hair is so fine, white and sparse that I still wear a wig. It has not grown long enough to cover my ears even after 3 years. My doctor increased by dose from 20mg per day to 30 mg per day this past March. My blood work has always been good until last week. My monocytes percentage which should be between 2 and 8 percent is now 16! I have not had fever or any symptom of infection,and I know this result could point to leukemia. I am so scared! Has anyone else had a similar result or know of any other reason my monocytes might be elevated? I am waiting hear from my doctor. I got the results on Friday, but I haven't heard from her yet. I hate pushing the limits of my immune system with xeljanz, but it has been so nice to have lashes, brows, and some hair. I know most of you understand that. What a stressful disease to have and to treat, and stress is what caused its onset in my case.
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do you use a steroid? or other medicine because I also had to increase but Cetais oral steroids. after stopping in two weeks my blood work has become good again. I did not have any infections like you. so do not panic tried to find the cause and do tests regularly. try to reduce the dose to 10 mg because xeljanz maintains the hair at this dose normally. There is a certain drug that increases monocytes. Leukemia has side effects on the internet.
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Kevin, I know this question wasn't asked for me. But I started on 11mg and had hair already coming in a lot. I used an extra 5mg a pill and the hair started coming in much faster. I do think I would have had the same results, just would have taken longer.
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Thank you for your answer, Kevin! I feel a bit better now. My mail pharmacy called this evening to arrange delivery of my medicine at the same dosage as before. My doctor has not contacted me yet, but she must not be worried as she would not renew my prescription until she saw and approved a blood test. I have been without xeljanz for about 2 weeks for that reason. I will probably not take that high dose, however, at least until I talk to my doc. I maintain what I have just fine on the lower dose, but we were trying to get some real growth on my scalp. I definitely don't want to get so sick that I can't enjoy what I have. Thanks again, Kevin, for the support!
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