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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Related Post on Alopecia World:  

Xeljanz / Tofacitinib

Olumiant

Jak Inhibitors

 

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Replies to This Discussion

Permalink Reply by Xeljanzmiracle on December 3, 2015 at 12:43pm
Hi Singh, I'm thinking that you are due to start experiencing some regrowth about now. Any signs yet?
Permalink Reply by Xeljanzmiracle on December 3, 2015 at 3:44pm
Singh, I read your other message, CONGRATULATIONS!!! I'm going to send pictures of my white/blondish growth that I had at the beginning and how my hair looks now. You are on your way!!!
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Permalink Reply by Nicolas on December 7, 2015 at 11:24am

Wonderful wonderful very happy for you Miracle, sure in little time full hairs :-)...

Permalink Reply by EJG on December 3, 2015 at 12:17pm

The 9th World Congress for Hair Research was recently held in Miami, FL.  On their website, HAIR2015.org, you can find a link to the abstract book which contains abstracts for all of the presentations.  Abstract number 82 appears to be the interim results from Dr King's research out of Yale.  It is a dual center study with Stanford.  I will try to paste in the results, but you can also visit the HAIR2015.org website to find the results of this study and some others that relate to AA.

Two-Center Open-Label Trial of Oral Tofacitinib in Patients with Severe, Recalcitrant Alopecia Areata Milene Crispin, M.D.1 , Brittany G. Craiglow, M.D.2 , Justin Ko, M.D., M.B.A.1 , Anthony E. Oro, M.D., Ph.D.2 , Brett King, M.D., Ph.D.2 . 1 Department of Dermatology, Stanford University School of Medicine, Stanford, CA, USA, 2 Department of Dermatology, Yale University School of Medicine, New Haven, CT, USA. Milène Crispin is a second year resident in Dermatology at the Stanford University School of Medicine. She received her Bachelor of Arts from Dartmouth College and her Doctorate of Medicine from Weill Cornell Medical College. Her clinical and research interests include the immunobiology of autoimmune and inflammatory diseases, as well as procedural dermatology. M. Crispin: None. B.G. Craiglow: None. J. Ko: None. A.E. Oro: None. B. King: None. LEARNING OBJECTIVES: Understand the interim results of a study investigating the safety and efficacy of oral tofacitinib in patients with alopecia areata. ABSTRACT: Alopecia areata (AA) is a common autoimmune disease, with a lifetime risk around 2%. Recent therapeutic insights derive from the discovery that blockade of common signaling pathways downstream of cytokine receptors inhibit established AA. While treatment of a patient with the JAK3 inhibitor tofacitinib or three patients with the JAK1/2 inhibitor ruxolitinib induced inflammatory remission and hair regrowth, confirmation of efficacy and safety in larger scale studies is required. We present interim results of a two-center, open-label trial of the oral JAK3 inhibitor tofacitinib. We enrolled 70 patients to undergo treatment with oral tofacitinib 5 mg twice daily for three months. The participants had AA including patch stage with >50% scalp involvement in 16 (22.8%), totalis in 5 (7.1%), and universalis in 49 (70%). Median age was 37 years and median current episode was 9.6 years. At the time of abstract submission, 45% of patients completed the trial, with significant hair growth over three months in 75% of these patients. Responders included those with pre-treatment biopsies that included inflammatory infiltrates as well as those with no detectable infiltrates. Non-responders were more likely to have had alopecia universalis for twenty years or longer. Tofacitinib was well-tolerated without significant clinical or laboratory adverse events. Our interim results suggest Tofacitinib is a safe and efficacious therapy for the treatment of severe AA.

Permalink Reply by Xeljanzmiracle on December 3, 2015 at 1:07pm
YAAAY! Yale Trial Interim Results: "suggest Tofacitinib (Xeljanz) is a safe and efficacious therapy for the treatment of severe AA." See EJG's detailed abstract results above.
Permalink Reply by hopeful2015 on December 4, 2015 at 10:15am

kimberj, Have you tried ruxolitinib ?  Apparently it is showing better results.

Permalink Reply by kimberj on December 4, 2015 at 9:52pm

I haven't tried it. What is it generally prescribed for?

Permalink Reply by hopeful2015 on December 7, 2015 at 9:59am

It is a Jak1/2 inhibitor designed for mylofibrosis.  Very expansive but more potent for AA.

Permalink Reply by marisa on December 7, 2015 at 10:22pm
Fo you know if topical ruxolitinib is covered by insurance?
Permalink Reply by kimberj on December 4, 2015 at 11:19pm

My doctor's appointment went very well today! She is certain that the joint pain and hair loss relapse are directly related to the major stress I experienced months ago. She compared the autoimmune attack to an adrenaline rush. During the experience, your body copes. Afterwards your body crashes. Hence the delayed immune response.

She feels that a quick, aggressive treatment of steroids :\  will stop the attack. She did not up the dosage of my Xeljanz but she did the Plaquenil. She also thinks that the lower dose of Plaquenil left me vulnerable for a relapse. The stress then triggered the autoimmune response. She said that the headaches, sinus colds, and sore throats were all side effects of Xeljanz and she wasn't to worried as of now. All my labs were PERFECT!

Permalink Reply by Lucas hoo on December 7, 2015 at 4:46am

Hi I would like to have a try,but before I start to use this expansive treatment,I have 2 questions:

1.if you have hair fully growth back by using xelijanz,will the hair fall again if you stop to eat xelijanz.

2.any side effects?

thanks for the answers

Permalink Reply by dr. who on December 7, 2015 at 5:40am

with the information published here so far ..

1. it seems for the majority of the people when they stop they relapse

2. again in general no serious side effects

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