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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 Starshine on
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Hi Katie girl, so good to hear from you! Thank you for the advice. I figured it would eventually stop and it is minimal hairless now. Sadly, I lost a good bit of hair, but hope in time it will recover. Have you actually stopped altogether at times? Did you keep your hair?
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Permalink Reply by sadele on
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Hi Starshine and Football Fan,
I use to be very active on here as well... but stopped because my hair eventually grew back (not my eyelashes or brows tho). I had my hair growing for about 3 years and about 9 months ago most o it fell out again :( I'm still on Xeljanz and I started taking oral Minoxidile, Dusteride and currently just got an Rx of Spirolactone.... I'll literally take anything to get my hair back. It's the MOT devastating thing to go through (as I'm sure you all know).. I have most of the hair on the back of my head but the front hairline, temples and crown have thinned out so much you see mostly scalp. Anyways, it's nice to hear you on here again. Still really praying that something gets approved for Alopecia. I had a Doc tell me recently that losing your hair is the same as having "deformity".. Can't get that out of my head... So I hope the FDA realizes that as well. Has anyone heard of anything coming out?
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Hey sadele,
my derm told me about barcitinib which is another Jak inhibitor specifically being FDA approved for alopecia. I believe it’s a Jak 1/2 inhibitor where as xeljanz is a Jak 1/3. She said it is having really good outcomes on trials where people who don’t respond that well to xeljanz respond better to this one.
https://www.fiercepharma.com/pharma/aad-2022-eli-lilly-plugs-olumia...
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Hi Katiegirl,
Thank you for your reply! I do think that I'm more of an "incomplete responder" to Xeljanz and perhaps I've developed an immunity of some sorts to it.... I don't know... I've heard about Barcitinib and follow different websites WAITING for some headline news that something is approved. I joke, (but not really), that I would rub cow shit on my head and face if it were a treatment that worked for alopecia. I follow some of the Medical Medium's recommendations but I'm just not as consistent as I should be. I think Eli Lilly is in the front runner of getting something approved so it's nice to hear that you know of it as well.
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Hi Sadele, I do remember you also. We are the old-timers on this forum. Nice to hear from you as well. I truly wish that something would get approved specifically for this condition. Xeljanz was a blessing, but I understand that not all respond to it. I understand your pain. Losing my hair was emotionally devastating. I don't think anyone can truly understand unless they have experienced it first-hand. Hang in there.
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so I have never been able to stop altogether. I do stop it when I am pregnant (this is my third pregnancy) and I usually go into a remission during that time at least that’s what my derm thinks. As soon as I deliver though I need to resume taking it. I am normally on the ER 11mg pill once a day. Sometimes I skip days and that seems to be OK.
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Yes, I can skip days also, but I think my relapse after Covid was due in part to the fact that I could not keep anything down for about a month, including Xeljanz. I also worry about becoming immune to it after taking it for so many years.
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Hi everyone so happy to hear from the three of you.I have tried xeljanz with every combination you can think of(Allegra,Spirolactone,even Hydroxychloroquine)still at about 40 percent of my hair so I can’t go without a wig.I do have all my lashes thanks to latisse and about 60 percent of my brows which look fine with a little powder.But would love to get up in the morning and not have to put a wig on.I also read jak 1/2 was going to be approved this year.At least you all were able to grow all your hair back!I had a very mild case of Covid back in December but didn’t notice any change. Congratulations on all the babies Katiegirl.
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hello I have been taking xeljanz since 2018 alopecia since a child I am 34 years old I recovered my beard eyebrows hairs but the hair 20%.
I usually take 11mg of beacon.
on June 3 my dermatologist will prescribe me baracitinib 4mg due to atomic dermatitis it will be approved end of 2022 beginning of 2023 for alopecia but alopecia is not recognized as a disease so dermatologists around the world will have to fight for it is reimbursed because even if it is approved it is possible that it will not be reimbursed.
I tried barcitinib from beacon I haven't seen a better response or worse than xeljanz but I really doubt this is the right molecule I used it for 6 months.
I will keep you informed of the evolution if it works better than xeljanz.
the best jak is ruxolitinib
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Thanks, Kevin. That is good news. Please let us know if it works as well as Xeljanz for you. I think if it is approved specifically for alopecia, it will be easier to get insurance companies to cover it. That is their usual reason for denying it.
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