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

 

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Permalink Reply by Carlie on June 4, 2018 at 9:49am

Absolutely not. If you have herpes and you may have it and not know, you could have a breakout. Xeljanz does suppress the immune system.

Permalink Reply by kevin on June 4, 2018 at 3:13pm

do not say nonsense carlie of course that if this is part of the side effects I had one around the mouth for 2 weeks that I treated and it's gone and it's well written as side effects

Permalink Reply by Mashloum on June 4, 2018 at 12:59pm

 Alhamdul Le Lah

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

Permalink Reply by kevin on June 4, 2018 at 3:13pm

do not say nonsense carlie of course that if this is part of the side effects I had one around the mouth for 2 weeks that I treated and it's gone and it's well written as side effects

Permalink Reply by Carlie on June 4, 2018 at 4:29pm

Kevin, herpes is a contagious disease that you just don't get out of the blue from taking a medication.  Many men and women have herpes but have never experienced an outbreak. Because xeljanz is compromising the immune system it might trigger an outbreak "if " you have the virus. If you have alopecia then it's likely you that other ailments might rear their ugly head. There is a blood test one can do to  find out if you are a carrier of herpes. 

Herpes simplex type 1, which is transmitted through oral secretions or sores on the skin, can be spread through kissing or sharing objects such as toothbrushes or eating utensils. In general, a person can only get herpes type 2 infection during sexual contact with someone who has a genital HSV-2 infection.

Permalink Reply by kevin on June 4, 2018 at 5:15pm

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Permalink Reply by Frida Rupert on June 4, 2018 at 5:20pm

That is my understanding too. If you have dormant diseases like herpes or tuberculosis xeljanz can make them reappear or appear for the first time ( this means it was there just never active). My immunologist has me tested for everything under the sun just in case before commencing xeljanz for this reason. 

Permalink Reply by kevin on June 4, 2018 at 5:30pm

quite frida all like acne I also acne early but that's calmed down. but it's the small side effects that can have it treated without problem. I had the herpes that I treated with antibiotics and cream I came up with in 2 weeks. i did my blood work is all is ok

Permalink Reply by kevin on June 4, 2018 at 5:39pm

Here are my results after 3 months and a half to 10mg. I will add a steroid the same as frida betamethasone

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Permalink Reply by kevin on June 4, 2018 at 5:40pm

And

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Permalink Reply by kevin on June 4, 2018 at 5:41pm

And

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Permalink Reply by Frida Rupert on June 4, 2018 at 7:55pm

That’s great growth. Very quick too. Are you finding the betamethasone helpful?

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