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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 Frida Rupert on
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Hi Carlie, no I’ve dropped minoxidil about 4/5 months back as I was having breakouts from it. No significant changes since dropping though I noticed my face is a little less furry (I didn’t mind- I’m of the mindset that if it grows then let it grow since my AU experience). If I ever start to shed I will definitely use it again though and I do believe it does help, as in encouraging the meds to work.
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My doctor kept telling me she has never seen anyone lose there hair 100% if they responded well the first time around on xeljanz and normally she will lower the dose . She did say she has.seen people.shed and get spots in which she will up the.dose but.never seen.anyone go AU/AT again while taking xeljanz and it worked the first time around
Have people fully relapsed? Gone fully bald afte getting all there hair?
I'm still worried. It's only been a.few days but it seems like my patches stopped moving.
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Yes, I've read comments about stopping and losing it all again. I'm not sure we will all go into remission. We may have to keep taking the xeljanz the rest of our lives, hopefully at a lower dose and maybe not every day.
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I was wondering if one has lost all hair while taking xeljanz.. that would be alarming and unfortunate, I'm assuming flares happen and vause patches which then doses have to be corrected for a bit.
(I'm going through a bit of a flare)
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Mine is getting progressively worse and I've been on xeljanz for 3 months. Not helping at all as far as I can tell...still on kelalog injections every 6 weeks also. Almost time to give up and deal with very minimal hair. Just a few patches of hair left... very depressing to say the least. Good luck to all.
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JC I’m in a similar situation. Started Xeljanz on December 4th and my hair loss
has gotten worse and I’m almost to the point that I’m going to have to do my first head shave. Personally I know Xeljanz takes time and I’m going to continue to use it... I haven’t had any side effects. I’m also getting injections every month.
I know that people on here haven’t had results for 5+ months so maybe just give it a longer. Agree that it’s depressing. I remember taking my first Xeljanz pill and thinking at least the hairloss would stop. A month later I have larger and more patches... but that isn’t how the drug works. It takes awhile to get in your system. For RA it can take someone 3 months to feel relief from Xeljanz.
Ive never seen myself without hair and at times I don’t feel like myself. After a shower I’m amazed at how mich hair I’ve lost and that 6 months ago I didn’t have any patch’s. Alopecia has changed my life. I’ve bought s good razor and cream and I’ve told myself that I’ll try to hold on for as long as possible and be hopeful that I don’t have to shave. In my heart though I know that it’s going to happen soon.
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i was in a situation like that. from having patches starting going to losing it all. I started Xeljanz 3 months after my outbreak getting a dose of 10mg/day. For 3 months I kept losing. Shaved my head and all. Starting wearing caps. Then switched to 20mg and within a month I started seeing some hairs coming back slowly.
Hang in there.
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Yea, it is one of the hardest things to go through. I remember how hard it was when I first lost my hair. It is tough, but hang in there. I have seen great results with Xeljanz, I personally don’t take it. But there are LOTS of success stories on it!
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Hi everyone !
Can I ask to the people who have steroid pulsing with xeljanz that did you not see any results at all? Like not even a single hair ?
I’m trying to figure out if I should try it or not ?
Thank you.
Kind regards.
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