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 kimberj on March 15, 2015 at 11:09pm

Thank Kat! I am pretty happy about it. I was pretty much bald at this time last year. As my hair came back in, it was pure white and it didn't regain any pigment until I started the Xeljanz. I am hopeful for complete regrowth for all of us!!!

Permalink Reply by Kat on March 15, 2015 at 11:12pm
Me too! I submitted my dna for research last year and am hoping to be invited to participate in trials when they move to MD Anderson in Houston. I speak with my researchers there often and am really confident in what they're doing right now. I have very good vibes about all of this. :)
Permalink Reply by roxy on March 16, 2015 at 2:56am
So awesome to read all this great and promising feedback .

Is anyone on this forum from South Africa and trying this out ? Also in the future when this drug is hopefully approved for alopecia will it be made more affordable?
Permalink Reply by AlopeciaDestroyedMyLife on March 24, 2015 at 7:13pm

Here is this months photo.

I know it will take many more months but I'm slowly getting there :)  (I think)

It looks like the main factor here is "time" some will grow hair very quickly depending on their circumstances and others will take longer if not much longer to grow anything at all. 

Permalink Reply by lusha22 on March 24, 2015 at 7:59pm
That is wonderful!! So happy for you... How long have you been on the medication now?
Permalink Reply by AlopeciaDestroyedMyLife on March 24, 2015 at 8:19pm

Thanks , I've been on Xeljanz for 9 months .

Permalink Reply by Julie on March 24, 2015 at 9:12pm
.Awesome! How long do you plan on staying on it? What's your long term strategy. I'm just wondering because I'm three weeks in and am not sure what I'll do after six months (that's my timeframe I'd like to be on it)
Permalink Reply by AlopeciaDestroyedMyLife on March 24, 2015 at 9:26pm

I would continue until it all grows back (if it does) . I think it's important to find out the benefits for long term totalis  and universalis sufferers who haven't had any hair in decades/years.

Depending on you're circumstances 6 months may not be enough time. I was really hoping that it would all come back in 3 months but it just was not the reality for me . 

Permalink Reply by Starshine on March 24, 2015 at 10:59pm
ADML, I am also three weeks in and am seeing little to no growth, but I have only been AU for four months and AA for Two years. What do you think the determining factors are as to how long it takes?
Permalink Reply by AlopeciaDestroyedMyLife on March 25, 2015 at 9:43am

3 weeks is very very early days . 

It would be difficult to say how long it would take there is just so many different variables.

Having vellus hair to start with is a good sign you're hair is ready to grow terminal. Try standing under a bright light and looking for thin, wispy, colourless hairs.

People with AA tend to respond faster than people who are AT / AU especially if they have had alopecia for a long period of time.   

You're body has completely stopped growing hair in the last 4 months which is fairly recent. I would say there is a good chance you would respond faster than I have. 

hope this helps

Permalink Reply by kimberj on April 1, 2015 at 8:06pm

I am so happy for you! Any improvement gives us all hope. My hair continues to grow and thicken. The pigmentation is black ( originally I had dark brown ).  I do have various areas that seem to be very resistant or very slow to respond to treatment. I just started my 6th month on Xeljanz today. 

Permalink Reply by Kat on March 25, 2015 at 2:07am
Okay, i have a question concerning bodily tension and inflammation: have u noticed any relief in that regard? I mean, obviously the drug is having some effect on the hair, but is your BODY feeling any different from the perspective of inflammation?

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