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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 Devices561 on
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One indicator of responsiveness in the studies showed shorter duration seemed to have better outcomes. In a perfect world I will go into remission after I come off this round of Xeljanz but if not I’m hoping this approach worked in “resetting” my cycle of alopecia and I will be still be able to reap the benefits of newer therapy in the not so distant future
TS
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I do cut my hair every few weeks. I like them short. I also do the same in my beard.
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Hey Mastros,
Good to hear from you. Sorry you're going through a rough patch. Agree with your thoughts on Dr. King. He's a great doc and a wonderful caring person.
Interesting thoughts on the wisdom teeth infection. There's been a lot of anecdotal links between AA & dental issues, but as you said "who knows?".
I wonder if 12 days without X is really the cause of the acute eyebrow thinning. I don't think it's enough time for the immune system to tag and attack the follicles sufficiently to cause shedding in such a short time. Considering the dry skin, it could also be just excess cortisol from anxiety & stress of both stopping X and extraction of the wisdom teeth, or the antibiotics as you mentioned..but again "who knows?".
Overall great progress. You're looking good! Thanks for sharing.
I wish you good health and a speedy recovery :)
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Thank you very much. I was postponing for a while the wisdom teeth problems because I was afraid of stopping Xeljanz.
The fact that I haven't really lost hair within 12 days being off is encouraging.
I wanted to share because I can imagine it's a dilemma that people may encounter in their lives and I understand that is difficult.
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also, a reason I thought about the teeth is that by accident I had twice my bloodwork done close to my infections and the white cells were elevated.
it's very tricky subject to examine I guess since the context really varies and it's a really hard to establish causal effects.
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Either way you needed to address the infected teeth, and at least you eliminated a potential issue down the road, so all good.
I've been tracking my bloodwork (every 2 months) for the last 3 years on a spreadsheet. Something interesting I noticed is that my WBC (white cells) reduce consistently throughout the summer months which I correlate to sun exposure. So get out in the sun as much as you can :)
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Your progress looks great Mastros, and I’m hoping that you recover from your op quickly. Perhaps getting rid of the infection will help lower inflammation which may result in a few less patches- though the patches are not noticeable and give you a bit of character (I know- it would be fine if it wasn’t for the alopecia- which means even tiny spots can raise anxiety levels). If you do lose a tiny bit of hair following the surgery try to not worry as I definitely think it will be a temporary lose that will quickly resolve once the body normalises again. Got everything crossed for a easy stress free return to good health for you!
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Thanks Frida! The recovery is going well. I am not really stressed actually. Staying 12 days without Xeljanz nothing major happened. Which is good!
I started a couple of days ago Xeljanz again straight to 20mg / day.
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Hi guys. I need some help asap! Here comes why. For like 3 years ago I lost all my hair. We (my family) worked hard to get me up to the world again from depression. We found a medicine called Jakavi. Jakavi was absolutely brilliant and all my hair went back. I’ve never been so lucky and happy in my life. But 6 months ago I couldn’t take Jakavi anymore because it was to expensive. So I went on with a new medicine called Olumiant and after like 3 weeks I started to lose hair. However I’ve now started with Xeljanz and I have taken the medicine for like 2 months. I have no regrowth yet (on those spots where I’ve lost the hair. It’s on the scalp.). I’m taking 20mg everyday.
My own thoughts are that Jakavi was at a such high dose ( 20mg twice a day) that when I switched medicine my hair started to fall out.
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Permalink Reply by macdev on
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bonjour
question de dose ? question d'efficacité d'un inhibiteur des JAK par rapport à un autre ?
La dose de Xeljanz (20 mg par jour) est déjà une dose assez élevée, non?
Laissons sa chance au Xeljanz plus logtemps , à mon avis...
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Sorry I can’t speak French.
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