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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 Newjack on
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Behind my head, when I posted in deceDeceit was the size of a dime grew quite large and started regrowing in the last 2-4 weeks.
side of my head I had 3 spots that all grew and kind of merged. I posted a picture of them back in January .it's actually bigger, wraps around the ear, but this portion is growing in. Behind the ear is more bare .
Just found this yesterday, I remember in January I felt see tingling in this spot and noticed thinning and broken hairs. Was hoping I caught it with xeljanz soon enough .
It looks like it already started regrowing I think.
I have about 2 or 3 other spots that are really small... But this is my progress from January 17th to today increasing to 20 mg . I am a bit sad it's not quicker or at least better results. I feel like it's not coming in as fast like when I first started .
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Anyone else use Tosacinix that made from Bangladish and get a good results!?
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yes there are some on here that have used it on this forum, most with good results or results comparable with xeljanz. It’s been tested by a forum member at 4.2 mgs vs 5 mgs in the Pfizer brand but still very cost effective. Read back through the forum and you’ll find examples of success (search the site for “beacon” and “tofacinix” for quicker navigation).
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Hi NewJack, I’m sorry you are going through all this stress. One thing I always think when I look at your photos is how amazingly thick your hair is, however given your experience with AU, I know spots are super scared regardless of the coverage I’m pthwr spots. Try to get some peace of mind that the regrowth has started so soon you will back to full coverage. You’re doing good!
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My hair is still very thick (not as thick as it was when I was at a full 8 months of 16 mg) but I will take it being AU.
I am happy to see that my spots are filling in and my shedding has gone down a little bit and hopefully by the summer I'll be back to where I was as far as thickness.... Regardless my hair is a little less like a brillo pad and I can style it a little bit easier LOL..
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Permalink Reply by Sad_Rapunzel on
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Please tell when did you start notice regrowth?
How many months on this pills it took to see visible hair growth?
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Hi SR, it varies vastly on the individual. Some get good results in 4/6 weeks, others around 3 months, some take up to 6 months +. Dosing and cotherapies are sometimes helpful to getting the regrowth happening and then can be weaned down or off. Many need 15 to 20 mgs for good results. Have you found any patches yet or is it still diffuse? Also- are you noticing considerable shedding or is it in line with normal hair fall. Xeljanz will only really work if it is autoimmune alopecia so may not be helpful for TE or nutrition related hair loss. I looked back at your photos, and one thing that I used when I was losing hair before it got to AU was tinted dry shampoo. If your scalp doesn’t react to it, it is a very good way of thickening up the hair you have until you can regrow. I got away with no wig or hat coverage until I had about 30% left and then I needed a wig and/or hats...
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I was on 10mg for 3 months and then increased it to 15 mg .I had 100% of my hair at full thickness in about 7-8 months .
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Permalink Reply by Beth on
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@fridarupert. Thank you for being so positive and helping answer mine and everyone else’s questions. It’s been a while since I’ve been on here but here are some recent pictures. Today was the first time I wore no hair or hat out. Thank you for being you !!
Beth
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You look amazing Beth! I bet it feels so good to be out in the air feeling that breeze on your head. I’d forgotten how good it felt when I was in wigs and hats and then those first few months -it was lovely:). Always overjoyed to see another person recovered from this condition!
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Hi Frida and everyone,
I need help on a question please..
Ive decided to start steroid pulsing as been on xeljanz for 5 months and have good regrowth on face eyebrows, eyelashes and beard coming in. However my scalp hair hasn’t really took off although I can see loads of white hairs on my head when seen with light.
So I wanted to know how should I steroid pulse? And what steroid to use ?
Should I try predisilone for 1 day a week at a certain dose ? Or another Steriod ?
I only want to use it to get a boost for scalp hair.
Or should I wait for the 6 month marker ?
I am currently taking 20mg a day.
Thank you for any advice on regime or what you all did it would really mean a lot to me if you could please give your advice to me.
Thank you
kind regards
Singh.
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I had the same type of growth. Facial came in faster than my head. I had lost of vellus hairs on my head for a while. It takes time. I would wait and not take any additional steroids with the xeljanz. You are on a pretty high dose of the xeljanz. I know it may not feel like it at times, but your health is worth a lot more than your hair. Give things a chance to take hold.
I currently take one pill a day and have maintained what I got back. I still have a few resistant spots on my head and legs but I feel as though there may be a little activity on them the past few months. I plan on stopping meds all together in a few months. In theory, I am not sure that one pill a day should really be doing much of anything.
Best of luck.
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