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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 Christopher's_mom on
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My son was diagnosed when he was 17 years old. It is very difficult. The dermatologists we initially saw offered nothing but steroids which they admitted would only be effective for the short amount of time he could be on them. I took my son to Northwestern University in Chicago. They have a hair loss clinic and are doing research on alopecia. They prescribed my son the Xeljanz and it worked, is working in that he has all of his hair now but he still needs to be on it.
My son initially noticed diffuse shedding of his hair as it was landing on his laptop. After that, clumps began to fall out. It was heartbreaking to see the clumps on the shower floor and to think that this was going to be how he was going to live his teenage years. Shortly thereafter his eyelashes, eyebrows and leg/arm hair fell out.He eventually shaved off all of his hair and wore a hat constantly. He wouldn't even let me see it. And he didn't want to discuss it as he was taking his medicines. Didn't even let me ask him if it was working. I was totally in the dark until he removed his hat at the drs office and I could've cried seeing the splotches of hair growing back. It does not grow back uniformly. So even while the hair is growing back she will still probably want to wear a hat...if hers even gets that advanced.
I am wondering if Dr King doesn't want to treat kids since the medicine is being used off-label for alopecia and research has not been done on people under 18 y/o.
But doesn't anyone get the emotional toll that is exacted on teenagers with this condition? The social issues...difficulty with academics as they feel isolated, embarrassed, scared and can't concentrate?
My son's school has a policy against wearing hats and was sent to the dean because I didn't think to notify the school first. The teachers and staff all became aware of his condition and wearing a hat was no longer a problem for him.
I would suggest that you tell her you are going to do everything you can for her...that there are medicines that help...but that it just may take awhile to get it. In the meantime I wish you and your daughter well while you go through the process. Please keep us posted.
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Yes, Alopecia Areata is what the diagnosis usually is and it can graduate to Universalis or Totalis. Mine didn't start with spots, it just started falling out in handfuls and I was completely bald in less than a month. When it got super thin I cut it off short, soon after my brows and lashes went. I tried Kenalog shots every 3 months for about 9 months but at about week 10, then little vellus hairs would fall out again and again. It took about 5 months for the Xeljanz to work and only after I increased the dose to 20mg a day and pulsed prednisone for 3 months. My hair is coming in uniformly, a little thicker on top..
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Permalink Reply by AnakinWildstar69 on
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kenalog shots every 3 months will never do the trick...i get mine every 3-4 weeks, and that's why i have full eyebrows, plus microblading helps.
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HiLJBMD, it’s such a extensive range of what can happen, some lose it all in weeks, others start with a spot or two and it never goes further. I got two patch’s and then over 4 months the rest shed off and i became AU. It’s took me another few months to get on the toficitinib and then around 4 months for that to work, with steriod pulsing(betamethasone 2 consecutive days a week at 5 mg) plus 20 mgs of toficitinib. I got it all back, thick and bizarrely curly (dead straight before). I’m going through a minor shed now so am going to do a short steriod pulse, it’s very minor and not noticeable but as I am Uber aware now I noticed a slight increase in hair in the comb. It seems to be resolving now.
Others on here have lost it in a matter of days or weeks, whichever way it is traumatic. If you can get her started on the toficitinib quickly I think there’s a good chance you can speed up the recovery but toficitinib does take time to work.
i really feel for you, the only thing worse then having this condition is watching your beloved child go through it. Just reassure her that, even if it gets a bit worse, there are very successful treatments and that she just needs to know she will feel like herself again.
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Thank you for this; I am afraid she is heading towards AU. I can’t tell you how painful this is
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https://www.drugtargetreview.com/news/23491/faulty-immune-cells-bal...
HELLO. I POSTED THIS BECAUSE IT IS VERY INTERESTING HOW OUR T-CELLS CO-ExIST WITH OUR STEM CELLS WITHIN THE HAIR FOLLICLE..hit the link and read the entire article. =D
In the new research, led by UCSF postdoctoral fellow and first author Niwa Ali, PhD, several lines of evidence suggested that Tregs play a role in triggering hair follicle regeneration.
First, imaging experiments revealed that Tregs have a close relationship with the stem cells that reside within hair follicles and allow them to regenerate: the number of active Tregs clustering around follicle stem cells typically swells by three-fold as follicles enter the growth phase of their regular cycle of rest and regeneration. Also, removing Tregs from the skin blocked hair regrowth only if this was done within the first three days after shaving a patch of skin, when follicle regeneration would normally be activated. Getting rid of Tregs later on, once the regeneration had already begun, had no effect on hair regrowth.
Tregs’ role in triggering hair growth did not appear related to their normal ability to tamp down tissue inflammation, the researchers found. Instead, they discovered that Tregs trigger stem cell activation directly through a common cell-cell communication system known as the Notch pathway. First, the team demonstrated that Tregs in the skin express unusually high levels of a Notch signalling protein called Jagged 1 (Jag1), compared to Tregs elsewhere in the body. They then showed that removing Tregs from the skin significantly reduced Notch signalling in follicle stem cells, and that replacing Tregs with microscopic beads covered in Jag1 protein restored Notch signaling in the stem cells and successfully activated follicle regeneration.
“It’s as if the skin stem cells and Tregs have co-evolved, so that the Tregs not only guard the stem cells against inflammation but also take part in their regenerative work,” Rosenblum said. “Now the stem cells rely on the Tregs completely to know when it’s time to start regenerating.”
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If you're in the the tri-state area go to Columbia dermatology in NYC.
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Dr. Kabigting. But like all other doctors' he has no idea what causes AU. I got a prescription for Xeljanz and some hope from him.
PS. Most insurances don't cover Xeljanz for alopecia.
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