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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 Mashloum on
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This week I finished all lab test for my son Anas (9years) and will start with my doctor the Xeljanz with 5mg daily
I praying for this recovery day and night
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Please if anyone aware of Alopecia group for kids using Xeljanz share it with me to follow
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please share with me the precautions list to ensure following that,
also Iwill give him the cold injiction to avoid any concequencies related to infections
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Permalink Reply by Frida Rupert on
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H Mashloum,
im sorry that I don't know more about paediatric use of tofacitinib. Though I think you are doing the right thing. I read somewhere that it was suggested that it be started in kids because of the fact that it seems to have better response in those who have had the condition less then 10 years (although many on this forum with the condition more then 10 years have had great success). Meaning that if you induce regrowth even for a specific time it restarts the "clock" on ten years- which means gthey can stop use after regrowth and then have a better chance in adulthood if the choose to use it then. I know if my kids got it ( as in AT or Au) I would be getting them on it but I would ensure very close monitoring by the various specialists. Personally for me I really think having a happy child is really important as happy children tend to develop into happier adults. To a degree that we can provide this as parents is of course not always easy (kids get bullied, kids get sick etc ect but I think if treating your son leads to hair which leads to a better experience of youth then I personally think it's the right thing to do (of course psychological help, ensuring he knows he is loved regardless etc etc is also important).
My son has autism (diagnosed the same year my hair fell out (2017- it was the worst year of my life by a long shot). We are getting him all sorts of therapies in order to try and get him ready for school - he's four. I understand it's quite heartbreaking to see your child struggle. I feel lucky that despite his diagnosis he is a very happy and loved child and remind myself that's what matters most. I'm sure your son is very loved and as long as he is closely monitored by doctors the use of xeljanz is a reasonably safe route to try. Let us know how you guys go- it will really helpful for other parents who are thinking of going the xeljanz route.
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Many thanks for your worm and kind reply, actually my son is 9 years old and for the last 4 years he is AU which is really very tough experience for kid in his age as well killing me as parents watching his son and could die to do anything to help him!
i would love to share my experience as parent for such matter since ignoring dealing with this concern in proper way could lead for very bad results related to both kid and parents
I will add new discussion for our jorney with Xeljanz for kids treatment due to many constraints related for this treatment
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Hi Mashloum
It's a great idea to make a group for kids with alopecia to share the experiances with Xeleljanz. My don is 10 years old, he is suffering of AU since 4 years ago.... I hope Xeljabz will be safe for kids as well.
Good luck
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Alhamdule Lahh
after 60 days using Xeljanz for 2.5 mg daily for my son 9 years old the attached images show a good progress for the medications
i will keep updating for the progress
your prayers please
2B526A3C-614E-48E5-A477-C4BAE6F95DBD.jpeg
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That’s wonderful!! It feels so lovely when you get Progress! So happy for you and your boy!
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