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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 Juan on
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Hi Frida, I have been in xeljanz for around 6 months now and 80% regrowth because some spots on my head arent filling in yet, is it possible to kick start regrowth locally with steroid injections rather than pulse therapy and trust Xeljanz can keep the hair there afterwards?
also, is it normal for some areas in my head to have darker or terminal hair and more volume than others? I think this are the parts where hair first started growing, so I wonder if ater a few months younger areas are able to keep up
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Hi Juan, I think 80% at six months is amazing! I think that it grows back in cycles so some of the hair that was “ready” or not as targeted by your immune system will come back first and eventually those other areas will fill in. I totally think that injections would work and at 80% at 6 months I wouldn’t think you need oral pulse steriods. Oral pulse steriods are effective if you are getting vellus growth that isn’t maturing, or a particular area - like brows or lashes are just not happening. Also if you are seeing very little coverage at 6 months- but at 80% I’d expect your hair to naturally fill in (well naturally meaning on xeljanz) in the next few months. I think at 6 months I had some areas that were coming in slower, and then by 8/9 months the coverage was consistent (also any thin areas were disguised by the rest of hair). I do think some doctors now are saying oral minoxidil is the preferred treatment but it’s hard to get your hands on and pulse steriods, for me, were the easiest solution (I used them at around my 4/5 month marks because I was very slow to respond, after about 3 months on them I weaned off). Hope that helps a bit. Glad to hear you are responding!
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Permalink Reply by sadele on
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It’s being fussy on my phone. I just added another one that is smaller in size so I hope it worked!
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So good to hear from starshine and sadele and see pictures with full heads of hair.They were on this site from the beginning and weren’t the best responders but didn’t give up.For everyone worried about not seeing growth in one month it can take over a year and experimenting with different strengths.Starshine seems like a lot of people are getting their xeljanz from India and a couple people had it tested.So happy for both of you!
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Hi Football Fan. Nice to hear from you as well. You are also a long-time pioneer for this forum. Even though Xeljanz did not work as well for you, you have not given up.
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Is anyone from the US erring medication from India? If so, can anyone provide contact information for pharmacy. Do you need a prescription from a doctor?
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How incredible. Are your plans to remain on the medication?
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I'm going to stay on the medication for sure for a couple more years. I don't want to risk losing what I have.
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Sadele, your hair looks beautiful! I am so happy to see you have such nice regrowth I remember when you weren’t responding. I check in from time to time I don’t come on as much as I used to but happy to come back and see more success stories.
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