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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 Patchesforlife on
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hi return life. what do you think of those vitamins cytokine suppress
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return life you r experts why could not stop tofa or ruxo?
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Liu- I'm not trying to be nasty or belittle your issue but if you just have a patch on your leg I don't think you, at this point, need to worry. Some people get a patch and it never goes worse then that. Here on this thread are people who are AU or AT or severely AA. Generally if you are considering systematic treatment, which is what xeljanz is, then you typically have lost more then 50% of your scalp hair.
I think if you have only lost a patch on your leg then perhaps you don't need to worry. Go and enjoy life rather then worry about treatments. Believe me if my issue was a patch on my leg I'd be thankful I didn't have more leg maintenance to do in the shaving department.
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I seriously dont understand what is his problem. this is so frustrating
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If you stop taking aspirin, does this effect of aspirin stays?
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I apologize for posting so much but it helps talking to people. I was thinking jak inhibitors suppreas cytokines that cause inflammation so basically what we need to do is suppress cytokines. There are some vitamins out there called Cytokine Suppress they are uaually taken by RA patients. Anyone thought abt trying those? Just trying to think logically here
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Don't apologise Patches - we all use this site as therapy as well as education. Who else is gonna understand our frustrations and help us brainstorm ideas. All I can say is thank goodness for this forum- without it I wouldn't have tried xeljanz (still wondering if it's working though on one eyes my eyelashes are coming back really well...I'm gonna look like that dude from clockwork orange...) and just hearing about other people's experiences is somehow soothing! Post away!
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indeed it helps thank you so much Frida
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what i mean is if people has full regrow, why we still need to take the drug, why could not stop slowly?
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I think some people can but it's at the risk that your body will once again attack the hair follicles. Some people who trick the body into remission may never have it happen again, others, as soon as the medication that stops the attack is withdrawn they will start losing their hair again. I think, basically, it's a decision that is weighed up by the doctor and the individual, personally if xeljanz works for me (still early days) I will keep taking it for peace of mind. The psychological impact on me of loosing my hair far outweighs the risk associated with taking toficitnib long term. For others this is not the case and no ones approach is wrong, just individualised.
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Frida. I think you will have regrowth just try to be patient. Also I was thinking just like you maybe we can trick our body into remission.
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