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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 singh on
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You look absolutely amazing Frida! Gives some hope to people who are struggling! Have a great summer
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Thanks Singh! I hope you can get onto xeljanz soon!
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Hi Frida you look great! Congratulations on your progress. I want to ask you do you still take LDN? If yes at what mg? Thank you
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Thank you Patchylatchy - Yes I do. On the odd occasion I forget and don't feel too different but have hashimotos there is a lot of evidence that it helps so I am gonna stay on it for now. I worked up to 3 mg and am staying on that for now. Some go up further to 4.5 + but as my hair is back I don't want to go ovwrboard.
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Thank you Suzie - I'm still getting my confidence back but I am grateful for hair esp since we are moving into winter here in Australia soon! A cold head at night is no fun as you guys have probably experienced!
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Wow, Frida, that's wonderful and how exciting! You are a beautiful woman. I forgot, were you AU? I've been taking xeljanz about 3 weeks now and I just had a Kenalog shot. I'm also, using minoxidil with beta something. I see little tiny, almost microscopic hairs all over my head. Still not eyelashes or eyebrows, though.
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Thank you Carlie, that such a kind compliment. yeah I was the full McCoy. The only place I had hair was one strand on my head and on my toes (would have liked those to fall out). The start is slow. I too started with tiny blond hair and at first it improved at snails pace, then around five months things picked up. The waiting is hard. Very hard... but stick at it- I think (understandably) many give up after a few months but if they tweeked dose and co-therapies they have a very high chance of getting there in the end. For me lashes and brows came first but some other people seem to get hair first and then the facial stuff happens! Stay strong x
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Thank you, so much you are an inspiration. I'm taking LDN and numerous supplements. I'm on a very strict diet as well. My doctor didn't know what pulse steroids are but he gave me a shot of Kenalog, which is more systemic. I guess every little bit helps.
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Hi everyone I continue to learn alot from this website and from this thread specifically and thank you all for the updates. I have a question I hope someone can help me. I been reading about autoimmune diseases and found out that they are generally divided into either of these categories: Th1 cell mediated (tcells) and Th2 antibodies (bcells) mediated. I'll give some examples commonly hashimoto's and RA are Th1 mediated and allergies and asthma are TH2. Does anyone know whether alopecia areata is TH1 or TH2 mediated? The reason I ask is this. If we are TH1 mediated then we probably can take some vitamins that can shift our immune response from Th1 to Th2 such as curcumin quercetin green tea extract while it we are TH2 dominant we probably want to stay away from these substances as they aggravate the symptoms and should take instead aswaghnda and others.. I am looking for your responses
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I think we are th1 because alopecia is closely related to RA and it works with RA drugs such as Xeljanz.
I have heard the word tcells thrown around when talking about alopecia as wl
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Seems like reasonable logic
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