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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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Replies to This Discussion
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Permalink Reply by ariel015 on
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Hi everyone. I'm posting as an update/asking if anyone else is experiencing something similar... In April (2021) my hair was the best it had been for over 3 years and it seemed like xeljanz (20mg/day) was really working for me. I had no active spots, just a couple still filling in. Then mid April my doc told me to decrease my xeljanz dose to 15mg one day and 20mg the next alternating. I also got my first covid vaccine and went off xeljanz and methotrexate for 7 days. A couple of weeks after that, I noticed a new active patch, and since then, my hair has been getting substantially worse.. I have 3+ large active spots all around my head and new ones keep coming. I went off the meds for 2 days when I got my second dose a couple of weeks ago just for reference.
I am wondering if anyone else on xeljanz or xeljanz and methotrexate has experienced flares from the vaccine/going off the meds for 8 days for the vaccine?? Or experiencing flares lasting now 3 months after the initial vaccine?
Any thoughts would be appreciated. Thanks!
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Hi, I think that your spots are from reducing Xeljanz and stopping it.
I reduced the dose and got spots. You, probably, need to increase your dose back to 20mg.
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Hi ! Thanks for your input, I really appreciate it.. I did go back up to 20mg over a month ago once I started noticing the active patches getting worse... do you happen to have any experience with how long it takes for things to resettle?
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Hi, it took 2 months for all my spots to get hair. I am back at 16 mg and no spots.
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Gotcha okay fingers crossed mine stop actively shedding soon then! Thanks again :)
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For me vaccines caused flares in my alopecia.... but I am not yet taking the Jak drugs so I cannot speak from experience. I hope it settles- I have heard many people in this thread mention that reducing does caused difficulty with new patches.
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Yes, I also took a break of 14 days for my first dose of vaccine and few days later I noticed multiple big spots and continued hairfall for a while. I lost all the progress I made with this medicine. Not sure what will happen when I take 2nd dose.
In India, there is one more company selling tofacitinib tablets (same chemical but different brand) to which I had switched 3-4 months back. I am not sure if change in brand could cause it or was it the gap in medicine due to covid vaccine.
For now, I started Xeljanz again.
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hello you should not have stopped xeljanz even this affects the effectiveness of the vaccine I do not want to be vaccinated for its reasons you,
I was taking xeljanz tofacinix and for 2 months I have been taking baracitinib baracitinix from beacon because I did not have a good response to the hair, I take 4mg in the morning and 4mg in the evening for the moment no noticeable change,
try taking 20mg of tofacinix to try to recover from the loss you have had, and at your 2nd dose do not stop the medicine.
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Permalink Reply by outforawalk on
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Let's remember not to offer medical advice on a public forum. I would think the effectiveness of the vaccine is more important since this involves a life-threatening situation and Alopecia does not. If it was me, I would stop anything that might inhibit my immune response unless a doctor or nurse tells me otherwise.
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