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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Permalink Reply by Xeljanz2015 on April 24, 2017 at 9:57am
Hi everyone! It's been a long time I have posted here. I was Au for almost 20 years. It's been 2 years since I started on Xeljanz and it's going well, no side effects besides colds here and there. I still have a couple of spots that need to fill and I've lost some hair the past few months probably due to a lot of stress. Started also taking Minoxidil a month ago. Hope it helps!
Eyebrows are good, but eyelashes don't seem to grow much, only a few. Attaching a pic of now.
Attachments:
Permalink Reply by sadele on April 24, 2017 at 10:05am
That's incredible after having AU for 20 years!! God bless you!
I'm actually in CT to see Dr King. I just flew in from a Seattle... my appt is tomorrow, Tuesday, at 9:30 then I head back to WA.
I'm starting from scratch (again) but have been praying that he has some news for me to share. I've been back on xeljanz, 20mg daily, for a month now... I have teeny tiny vellum hairs on my head. Nothing on my brows or lashes yet.
I'm hopeful!
Thank you for sharing!!
Permalink Reply by Xeljanz2015 on April 24, 2017 at 10:54am
Sent you a message sadele! Thank you!!! It's definitely a blessing to have my hair back after so many years! Even Dr King thinks it's amazing and he's always thrilled to see the progress!
Permalink Reply by Rascalx2 on April 24, 2017 at 12:24pm
Sadele, I have same, vellus hairs on head, sparce on top, peach fuzz on brows.. it has not changed in weeks. From 2 feet away, still completly AU. The hairs are white... oh and I have mutton chop sideburns which is sparce fine white hair. Currently on 20 mg a day for past week. I was on 20 mg a day alternating 15/20 mg every other day few weeks back. Not having results that most people are having, curious to find out what dr king suggests considering we both seem to be responding in similar way
Permalink Reply by sadele on April 24, 2017 at 7:27pm

I'll report back tomorrow after I meet with him.. How long have you been on the medication? I was previously on it for 1 1/2 year and got good growth on my head, I added steroid injections and I think that really helped. There's so much in the "works" with these parma companies, it will beg great to hear what Dr. King sees in the future.

I have a ton of questions to ask him!! 

Permalink Reply by LIU CHUNXIU on April 25, 2017 at 8:07am
could you please ask dr.king, could we stop the medicine slowly and slowly or we need to take it for 2 years or 3 years or forever?
Permalink Reply by Patchesforlife on April 25, 2017 at 12:07pm
Hi Sadele! Can you please keep us updated. Csn you ask when does he envision xeljanz to be an official drug for alopecia?
Permalink Reply by Rascalx2 on April 26, 2017 at 6:36am
Ive been on xeljanz for 8 months
Permalink Reply by Patchesforlife on April 25, 2017 at 12:05pm
This is great! Congratulations
Permalink Reply by Frrankie on April 24, 2017 at 10:48am
X3ljanze2015 I just started xeljanz a month ago. I have AU for 40 years. What is your dose level. As you may assume I am at two pills a day. It is early but I think two pills is too low for my BMI. I am 5,7 225 pounds...athletic. Not sure if I see any real response yet. I have always had fuz. The fuz my be thicker and my facial hair my be a little thicker. Hard to say.
Permalink Reply by Xeljanz2015 on April 24, 2017 at 11:00am
Frankie, I started at 10mg/day, but since I still had a few spots after almost 2 years we increased to 20mg/day 4 months ago, but honestly I haven't seen a difference just yet.
You'll have to stay a the minimum dose for awhile and only after a few months the doctor will consider increasing or combining other rx. Good luck!
Permalink Reply by Frrankie on April 24, 2017 at 11:04am
Thank, I do expect it to take sometime. Glad to see it is working out for you. The pictures are great. I will post progress when I have some.

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