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 Sp06 on October 5, 2015 at 7:54pm
What were the initial doses that u guys started off with everyday? 2 pills a day? And what dose do you typically increase to if that initial dose doesn't work?
Permalink Reply by cws on October 7, 2015 at 8:04am

Start off at 2 per day. If you have zero response for 3-4 months then you might jump to 4 per day.

If you have some response off 2 per day, you may just want to keep at that level for a couple more months and see if things continue to improve at a decent pace. If the pace continues to be slow, then move to 3 per day.

Make sure to get blood tests every 3 months to make sure all is well.

Permalink Reply by Sp06 on October 7, 2015 at 8:29am
Oh ok, thanks so much. What do you generally have to monitor in your blood while taking xeljanz, what specifically needs to be measured during a blood test?
Permalink Reply by Summer2000 on October 7, 2015 at 10:16am
Follow up with local Dr today. I was on Xeljanz 2 a day with minimal results, took me off, started to see a little growth a few weeks later and put me back on 3 day plus Plaquenil in mid August. The scalp growth completely stopped, I ran out of Xeljanz last week and now I have facial hair beginning to grow. Dr seems totally perplexed - keeping me on the Plaquenil and waiting to see if insurance will fund more Xelhanz. I see Dr King in two weeks.
Permalink Reply by Megn on October 7, 2015 at 4:19pm
Pictures of my 9th week of growth. Hoping it continues to FILL in....
Anyone know when the pigment returns?
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Permalink Reply by Julie on October 7, 2015 at 5:48pm

I had white fuzz around month 4 and it started coming in darker around month 5-6. I am just starting month 8 and have about 90% of my hair back at terminal! Just waiting for a few little patches in the back to fill in. I think im about a month or so away from 100%. I got all my eyelashes and eyebrows back around month 4 as well. I was almost au. Taking 2 pills/day. Also have been getting cortisone shots about every 6 weeks and added plaquenil since month 4.

Permalink Reply by Sp06 on October 8, 2015 at 11:44pm
Does anyone happen to know any dermatologists that have experience with xeljanz in Dallas?
Permalink Reply by Kat on October 15, 2015 at 12:45am
Commenting here in case u get a reply. Good luck. Dr. Sklar has been my dermatologist for years but is far from progressive. And he is supposed to be the best in the city.
Permalink Reply by Lucas hoo on October 9, 2015 at 11:45am

from my view,the tofacitinib is only useful when you have both AU/AA and PSORIASIS.

Permalink Reply by Xeljanzmiracle on October 9, 2015 at 12:06pm
Why do you say that? The Xeljanz was more effective on Kyle Rhodes hair regrowth than on his psoriasis. Those of us AA or AU have really benefited emotionally and psychologically from having our hair back.
Permalink Reply by cws on October 9, 2015 at 1:34pm

Not following this logic. Is this centered around cost?

Permalink Reply by Xeljanzmiracle on October 9, 2015 at 2:11pm
I replied to Lucas hoo's comment above

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