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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 Ricky_1008 on
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If it's Prednisone.
Take all 60mg in the morning with food. Prednisone is causing insomnia so morning is the recommended time.
Take 5mg of Tofa a few hours later.
Then take 10mg of Tofa at night.
I would recommend to take Prednisone as follows:
1st week - 60mg,
2nd week - 50mg,
3rd week - 40mg,
4th week - 30mg;
5th week - 20mg,
6th week - 10mg.
Take 15mg of Tofa all the time.
i follow this protocol . Credits to Nat!!! she has been a beacon of HOPE for me.
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Thanks ford sharing .. I started 10th of September 6 months after I started losing all my hair .. I’m on 11 mg in the morning and 5 at night. I only see some hair on the hairline but very thin and you can count them. Nothing on the rest of my head. It’s 10 weeks now and I don’t see any changes to get excited for. I’m going to wait another 2 months and if nothing changes I will go and ask for steroid pulsing .. I heard that the 300 mg once a months for three months is what everyone is going for ?! Did you have eyebrows and lashes come back ?
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Hey man, just hold on. Trust me even after having vellus hair i still feel like i don't think i will respond but we have to be consistent with this medicine. i think in the long run it will work out. Just try predisone if you think the side effects are worth it. you will definitely see progress. for my eye brows i did a prp treatment so i have them back but my eye lashes are slowing kicking in , i can see vellus tiny little eye brows starting to grow.
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That’s really awesome news. I’m very happy for you and thanks for sharing your results. Did you have any side effects from steroids ?
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Ricky, yes the vellus hairs will start to change. My doctor followed the Dr. King's Protocol for 300mg dose once a month for 3 months, No I did not have any side effects.
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It’s a bit confusing what protocol to follow. Is the 300 once a month for 3 months just one pill once a month of 300 mg? And after three months do you just stop and continue with the xelijanz ?
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I don’t think there is a pill of 300mg of prednisone . It comes in 5mg
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Maybe Charlie can answer that? Did you have any side effects Ricky ? For how long is your steroid course ?
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It’s my 4th week I have it after eating breakfast in the morning . Like I mentioned I started with 60mg/ week protocol but now I’m on 30mg /1 week protocol . Yes I do have side effects . I have gained weight, I get hungry all the time. Sometimes my joints hurt . And also no sex drive at all . Also developed a tiny moon face . Not so much but you can tell that my face looks different
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Interesting ! I guess these side effects will disappear once you stop the course ! I need to look into different protocols and what everyone has done to see what I can ask my dermatologist on my appointment in January ..
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Yes I’m sure your dermatologist can guide you in the right path but I can confirm that with prednisone you can get vellus hair. My task now is to built from here and make sure tofacinix can help my hair grow back . One I start seeing black terminal hair I will post my progress.
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