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 Karen Smith on October 20, 2014 at 8:54am

Thank you for posting the update. I am hoping for continued good reports from you.

Permalink Reply by Christine on October 19, 2014 at 11:18pm

I'm very thankful to you for postng your experience here, it is so good to hear from a real person instead of just the stats when the trials are over, I've heard that they are working on perhaps having a topical application of this medication, have you heard anything about that? It would be great if that could be a possiblity, as there would be less chance of side effects. Good luck as you conitnue this trial. please keep us informed.

Permalink Reply by cws on October 20, 2014 at 8:17am

I have read/ heard mixed things. I do believe it will happen. They had topical applications for the mouse models so I would think it can certainly be produced for us. With AA being the majority of the alopecia autoimmune suffers, I would expect the topical to have the best chance of success on becoming an approved drug for this disease. The lag time will be having to wait for larger trials to take place. Once proven, I believe this could be fast tracked from an FDA perspective...there are no FDA drugs approved for alopecia areata.  I don't know what the approval processes will be for other countries outside the US. 

Best of luck...research is finally starting to happen for this disease.

I plan to continue monthly updates here.

Permalink Reply by Starshine on October 20, 2014 at 9:39am
Thank you so much for keeping us updated. I agree that it is great to hear from real people versus just getting trial stat results. I hope the good results continue. I follow everything that is posted on this thread.
Permalink Reply by AlopeciaDestroyedMyLife on October 24, 2014 at 6:29pm

Update 2:

My first terminal hairs!

I have grown some new thick terminal eyelashes on the top eyelid. Its not complete yet but the areas around it are either white or light black.  I also have half growth on the bottom eyelid right side. Still nothing on the bottom left part of the eye.

My head has a substantial amount of vellus hair spread seemingly all over my scalp (they are individual hairs and are not thick apart from the back left hand side which is.

I have a full complete vellus hair beard which I hope will turn terminal eventually.

My arms also have a substantial amount of vellus hair everywhere.

There are 10 light black hairs forming on my right eyebrow and a 2 strong black vellus hairs on my left eyebrow.

I have now been taking Xeljanz for over 4 months and just over 1 month on 2 tablets a day.

I am still waiting for some major changes to a happen and I really hope and prey it will.

Permalink Reply by Scott on October 25, 2014 at 10:05am


Thanks for the update. Like others, I am also following this thread with great interest.

Permalink Reply by Rose on October 25, 2014 at 11:07am
Awesome !!
Permalink Reply by Andrey on October 25, 2014 at 2:34pm

HOPE

Permalink Reply by Andrey on October 25, 2014 at 2:48pm

HOPE

Permalink Reply by Rose Marie' on October 27, 2014 at 3:10pm

This is really exciting. :)

Rosy

Permalink Reply by DJ88 on November 4, 2014 at 12:33am

Hey ADML,

I was wonder, since you started taking this thing, have you noticed any hair loss or shedding at any point during treatment? Like in the beginning or even recently? Im trying to draw a connection between this and berberine.

Permalink Reply by AlopeciaDestroyedMyLife on November 8, 2014 at 8:40pm

Hi DJ,

I have lost no hairs aside from the normal hair cycle which seem to be replaced. 

When I first started taking Xeljanz my alopecia had started again.

Within a week It had stopped spreading and seemingly halted any more attacks. 

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