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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 dimitris on
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Hi everyone
I am in generic tofacitinib since February, with 10 mg daily. After 3 months (in May) I increased the dose to 20 mg. I then observed an accelerate regeneration. So far the skull coverage is about 70% (although I would expect a better results). A week ago I had a relapse in the scalp, especially in the back of the head. I've never stopped 20mg daily. There has been some stability in the growth and suddenly i have a throwback.
Ιs it possible that drug resistance has occurred?
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Hi dimitris, I don’t think the medicine stops working. I think we have flares of the disease. Meaning - the attack on the follicles becomes stronger for a period of time. Once the flare passes I think the Tofacitinib will regrow the hair lost. Some of us have more temperamental immune systems, and various factors can lead to these flares. The role of xeljanz is to mitigate these to an extent and regrow once the flare subsides the hair comes back. So I don’t think the body builds a resistance - more so our recovery is not linear, we have improvement overall but there will be set backs. I think the key is- in the long run you will have more hair but there will be times sheds happen.
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Hi Frida
your words give me a lot of courage to continue this fight.
I know that none of us are alone.
Thank you! Thank you! Thank you!
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Yeah I only was off about a week- and then restarted. So far no repercussions from having the short break... but, as we see on here, the chance of small flares is pretty consistent with the condition so I try to remain calm and realise if a flare comes it won’t mean going back to AU, just need to ride them out!
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I'm still being very patient with my spot that I developed in July. Some baby hairs came out of my spot, they looked healthy and had bulbs. I'm wondering if there were weak because they were new. But I'm getting annoyed. 3 injections and 3 months of 20mg of xeljanz no progress.
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