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 singh on September 20, 2015 at 11:15am
Not for tofacitinib citrate no. But a developement of a jak inhabitor for alopecia I's exciting and hopefully just as good if not better for a treatment for alopecia. Am
Hoping for a cure to this in the next 5 years.
Permalink Reply by gatesm on September 21, 2015 at 2:24pm

This is particularly interesting because in the last sentence of the article it indicates it is for a TOPICAL. I wonder if that would be approved that fast. It would seem to me a topical would potentially be more affordable and have a better safety profile than a systemic drug (but maybe not more affordable, who knows).

Permalink Reply by Rach1992 on September 19, 2015 at 11:18am

Do you guys know if the drug is supposed to be taken forever or if you take the treatment for x amount of time and the hair is "supposed" to stay ?

Permalink Reply by cws on September 21, 2015 at 11:58am

If you are universalis, I would say yes. Hopefully it will only take a stepped-down maintenance dosage once everything has grown back. I see these drugs as a treatment until a true stem cell "cure" is put into practice. There are studies of this having already been done, but I think we are still 5+ years out for a perfected version of it.

Permalink Reply by Megn on September 21, 2015 at 9:53am
Tomorrow will mark 7 weeks on Xeljanz 10mg a day. I had zero hair before starting. Here are the pictures. Hoping it continues. Slow and steady, no terminal hairs and no pigment. Seeing hair on face, lashes, brows, legs (all vellus)
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Permalink Reply by Sabri on September 21, 2015 at 1:20pm
Wow Megn
Your hair is growing. Happy it's working. Shame hair takes a long time to grow.
Keep it up before you know it you will have a full head of hair.
Good luck keep us updated on the progress.
Permalink Reply by HS on September 21, 2015 at 9:39pm
Wow!!! This is wonderful. You and I have very similar growth so far! I started July 2nd.
Looks great!!!!
Permalink Reply by Chubs on September 21, 2015 at 9:48pm
Keep up home folks my son is a doing great on xejianx full head hair from completely bald since march 2015-7 months 10 mg per day
Permalink Reply by Seahawks Dad on September 23, 2015 at 11:43am

Chubs...what's your game plan to reduce medication now that your son has his hair fully grown? The gal on instagram alopecia experiment is now just taking one pill a day vs. two...no noticeable differences or hair loss.

My daughter just crossed 10 weeks on Xeljanz and she is 90% full regrowth..sides are still a little stubborn but coming along. We expect 100% full regrowth by Thanksgiving.

Permalink Reply by marisa on October 22, 2015 at 9:25pm
Hi seahawks dad....how long has your daughter had alopecia? Can you post pics of your daughters progress?
Permalink Reply by Seahawks Dad on October 22, 2015 at 10:58pm
She was completely bald for over a year...started methotrexate August 2014 through June 2015...no real progress. We started on 2 pills a day July 27th and just crossed 12 weeks. Eye brows completely regrown and hair at 100 percent coverage. Just need a few more inches on top...only side effects until now are head aches and mild achne. Will post pictures shortly...miracle drug for sure.
Permalink Reply by Steve on October 23, 2015 at 1:22am
Seahawks Dad, this is sadly untrue in regards to the alopecia experiment girl on Instagram. Since she went down to once pill she has sadly started to lose hair again. She has placed up 2 pictures in the last couple of weeks to show and prove this. It's a very disheartening sign but she isn't letting it put her down. She is going to see her dermotologist again. We all must keep our hope alive!

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