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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 Jcortez05 on
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Hi was wondering how you are doing now ? Is the hair still falling out ?
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Permalink Reply by Xeljanzmiracle on
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Thank you Sara. Here's a couple of clearer shots.
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IMG_20160225_051532.jpg, 430 KB
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Permalink Reply by AlopeciaDestroyedMyLife on
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Looking great Miracle! Remind me how long you have been on Xeljanz for?
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Thank you ADML. I started on July 28, 2015.
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Permalink Reply by Fighting Alopecia on
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That is amazing! Congratulations Xeljanzmiracle! I wish for you to continue to have growth and to be rid of Alopecia once and for all. I wish that for everyone suffering from this disease.
Still waiting on my prescription - waiting for a TB test to clear me before my Derm. prescribes it. Fingers crossed!
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Thank you Fighting A. I wish you and all other fellow Xeljanzers the same success. May we continue to support and encourage one another and hold onto our faith.
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My daughter has totalis and started oral xeljanz in December after several months of topical with no success. She is seeing growth amazingly after 2 1/2 months! It is patchy thus far but significant length which is amazing, so we are very hopeful and grateful after such a short time.
The news of the hair on others falling out so quickly is so devastating to hear and I hope that the science continues to develop for all fighting this disease!
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Congratulations to your daughter. The hair WILL fall out when the treatment is discontinued. I don't understand why everyone seems so shocked at that. We started Xeljanz for hair regrowth. If we stop, the growth discontinues. It's as simple as that. In the meantime we are fortunate to have something that has positive results for the MAJORITY of people who try it with autoimmune induced alopecia.
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How long did you treat your daughter with topical? And how old is your daughter?
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Marissa,
Great question.
Objectively speaking,it would be a good idea to try to track progress of topical medication vs. Oral form. My understanding of the scalp is it is thicker skin than the rest of the body, and topical may take at least 6 months or longer to take effect. So, it would be great to track this effect.
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