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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 Rascalx2 on
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I noticed my appetite increased alot when I started xeljanz, Not sure if that may the reason people are having weight gain. I try to eat right/ healthy most of time and appetite did subside. I have not had weight gain.
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Anybody try allegra for alopecia? My derm said to try it but Im not expecting much. Wish it was that simple. Got two shots of cortisone in butt to try and stimulate some growth w xeljanz. I am startinh to see black hairs on brows, even some strays in pubic area ... feel like im goin through puberty again.. gotta laugh right?
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Permalink Reply by Patchesforlife on
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Is xeljanz working for you??
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Hi Frida,
My son is soon to turn 18 and his journey began exactly one year ago when he noticed general hair shedding followed by some random bald spots leading to 50% baldness (and then shaving his head), loss of some eyebrow and eyelashes and nearly complete hair loss of his arms and legs over the course of a month or two. He began Xeljanz in February, 5mg. twice a day.
Fast forward to today and he has full eyebrows and eyelashes and enough hair for a haircut (although he is preoccupied with a tiny bald patch on the back of his head by his neck and two symmetrical bald spots toward the front/sides of his hairline). He traded in his knit cap for a baseball cap but honestly, he could do without a hat at all and I don't think anyone would notice them. I am so happy for him because this past year and his last year of high school was pretty miserable in that he did poorly academically and did not attend his high school homecoming, prom or graduation ceremony.
But he gets to go off to college in two weeks with hair! And he is excited to begin. I am so happy he doesn't have to worry about his hair. I just hope he remembers to take his meds so it doesn't fall out again.
His only side-effect has been acne. The doctor suspects it is either bacterial or fungal. He began antibiotics about two weeks ago and is responding a bit. If he doesn't respond to that he will be treated for the fungal type. He received cortisone injections to speed up the regrowth in the three stubborn areas that the dr said are the last areas to regrow.
How long have you had alopecia?
Good luck!
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Thanks so much for the info. I had minor patches about 10 years ago which regrew within 3 months but this time (34 years old - mother of two little ones) I noticed bald spots in December and about 4 months it was all pretty much gone... I had a terrible ear infection and a bout of glandular fever last year then 3 months later the patches appeared. I've lost about 95% scalp hair, my eyebrows have massively thinned and there's only a few lashes holding on for dear life and some hair down there (sorry to be rude) has thinned about 70%. Still have some body hair on legs, arms and armpits. I also discovered I have hashimotos (lost over 25 pounds in the period dec 2016 to march 2017 and unfortunately look like I am suffering cancer without makeup and wigs. My derm tried me on methotrexate and cyclosporine but alas no help and I really had to work to convince my hubby to let me give Xeljanz a go, so I really hope it works (even to get lashes back....). Gosh it's been the hardest year to date of my life.... my immunologist is taking over my treatment now as he covers both my hashimotos and my AT/AU and I was going back and forth between specialists which was a bit stressful....I'm so encouraged to hear about your son. Being able to go to College with confidence is a huge thing. The one thing I'm grateful for is that this has happened to me at a time where I have a secure job, two kids to focus on and good family support.
Wish me luck!!!!
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I do wish you luck!
We take our hair for granted and complain about bad hair days until it just disappears.From what I learned from others, not having eyelashes and eyebrows is the worst.
My son goes to Northwestern in Chicago for his care where they have a hair loss clinic. They are doing a double-blind research study on a drug different from Xeljanz but my son wasn't enrolled in it because he responded to the Xeljanz.. I mention this only because my heart breaks for non-responders and I wish to let them know 2 things:
1)There is another option through Northwestern's research trial though a 50/50 chance of getting the actual drug because it's double-blind and half get a placebo.But since it's a research trial it is free.
2) His dermatologist believes the progress of treatments is moving rapidly forward.
Try to stay positive and enjoy the hugs from your little ones.
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https://www.sciencedaily.com/releases/2017/08/170814134816.htm
What you think of this people ? They found a new potential way to grow hair stem cells..
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I am thrilled that so much research is being done but I'm afraid it's going to be years before anything ever gets approved.Just take a look at xeljanz it's an approved drug already and it seems to help about 70 percent of people with AA and they keep doing trial after trial for the last 3 years.Why can't they just approve it for AA already and let people get there lives back.There is not one drug approved on the market for us.
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I think that their target audience is for natural balding from genetics. i think that is where the money is at for drug companies. That will probably be addressed before alopecia disease. But Ill try and stay optimistic!
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Hi more experienced Xeljanz users - just hoping for some advice as my next appt with my immunologist isn't for another month- can I take berberine with Xeljanz? Someone said no but I'm not sure of the reasoning. Would it enhance or detract from Xeljanz effects (the hair growth ones)... any advice from people who have more knowledge then a newbie like me would be great.
Thanks
Frida
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1 year on Xeljanz and my mullet is growing strong! Just one stubborn eyebrow that need to fill in still. Weight gain and acne still issues for me.
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