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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 Frieda, it is great to hear from you as well. I am glad that so many of us long-timers are still checking in once in a while even though we don't post regularly. I know you helped so many people in the past. Thank you for the advice. It makes sense that Covid or the vaccines awakens the immune system and for us that usually means trouble. As for the payment, did you just ask your bank to set up a transfer account? Do you think something will be approved this year specifically for this condition?
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Hi Sunshine, see my reply to Nat, though again not sure if being in Australia means a different process. I think something will be approved soon, but caution that this will be a Jak inhibitor- so while it will be easier to get a prescription and insurance coverage it may not work much better than current jaks. I think a great majority of us get a response on one jak inhibitor or another (ruxo being possibly the gold standard) but unfortunately that 1% who don’t respond to the current jaks will still struggle to get full coverage. That said - most of those who want treatment but haven’t been able to get it because alopecia is off label, this may be a huge moment for them.
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Just felt like sharing a comment my dermatologist made. She said the new jac inhibitors look to work better than xaljanz for alopecia. With that said let's see. This disorder is individually different from person to person.
I have had alopecia for 45 years. FYI I believe my doctor is connected to trials and is in the know.
I wish everyone the best results please don't get your hope up too hight.
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Yes, I did see this, Kathy, and it looks very interesting and promising. Thanks for bringing it to everyone's attention!
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Yes I am on the Concert Clinical Trial and it works fantastically. It takes months to see great results. I have 0 side effects, swore I had the placebo. Been on the study for a year this month but now I have a full head of hair, from almost bald. I am in the unblinded part of the study so I know i'm getting the real deal and they upped my dose. Swear my hair started growing from my left side to the right. Eyebrows are still thin but they just started growing back.
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Permalink Reply by outforawalk on
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I've been following this thread for a while and wanted to research these drugs more before trying any. Most drugs and other remedies have contraindications that I'm not up to date on. The last time I had any regrowth of scalp hair was in 2005 (17 years ago) I had around three inches of thin hair and it looked like a boys hair cut but I went out and around with no head cover anyway. Does anyone here know if I would still be a candidate for the treatments everyone is talking about? Any help would be appreciated.
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American studies i have checked state responsiveness work well/good for severe alopecia.
Yours sounds sever.
FYI, I have had alopecia universalis for 46 years. Xeljanz makes a difference with little to no side effects with me.
Check my past posts for my experience. There are a few.
Good luck , there are options.
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Hi Jim can i ask how long have you had no hair for before you started ctp-543
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About 2 years I was severe. Even before that when it grew back with steroid shots, never was this thick and would eventually fall out. Went back and looked been on it for 1 1/2 years. Started jan 2021. Here is a before an after. Before is my work photo, only good pic of before.
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