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 Jcortez05 on December 19, 2015 at 7:06am
There are some brown hairs in there too.. Lol very fine ones but they are there. I currently use a discount card I got in October/November and my dr gave me 2 months supply .. Also do you think come January I could get s new discount card or seeing as though I got it late in the year I can't .
Permalink Reply by Jcortez05 on December 19, 2015 at 7:08am
Also where do you get yours filled at? I use Walmart specialty and it's like $3,100 ..I feel that's a bit high
Permalink Reply by dr. who on December 19, 2015 at 7:34am

so your regrowth started already in the 2-3 week! impressive and of course happy for you. I have  been two weeks and half, and yes I noticed a few hairs in my cheeks at the beginning of this week. However this happened after i did some meditation +2 hours per day, two days ago I've stopped meditating because I've been really busy. and all has fallen.

i know you all are going to say, patiente !, eventually itll grow , im really doubtful , there's literally nothing there,  and believe I go to the sun, check with a portable mirror to see if i can notice any improvement, but nothing. Only  thing I've notice after taking xeljanz is that my gums are hurting a lot, particulary in the lower jaw  some time ago I read a paper about some doctors that found out a relation between dental problems and alopecia areata.  I even wrote to the author of the paper explaining my situation and he kindly wrote back to me, saying that even the smaller infection can cause alopecia areata. To rule out this possibility, few months back, I extracted the dental piece I believed was causing the problems. No improvement, but now that I have started with xeljanz and feeling pain in the adjacent teeth to the one I removed, im starting to believe that perhaps the dentist extracted the wrong piece,  this could be the cause of all these+ some stress as triggering factor.... 

Permalink Reply by Xeljanzmiracle on December 19, 2015 at 11:01am
Dr. Who, its only been 2 weeks since you started Xeljanz! Most of our new Xeljanzers, including myself, couldn't see any visible growth for a month. So continue relaxing and meditating and let the drug work. The odds are that you will see some growth within the next few weeks. Let us know when you see those first whitish/blond hairs ok? I'm not sure if you are AU, are you? Some folks on here have had more rapid growth because they still had body hair and hair on their heads when started Xeljanz. Everyone is different, so we should not get upset if our regrowth is at a different rate. Growth is growth. It's progress from where we were. Let's continue rejoicing and be happy for one another. 2016 looks to be an AMAZING YEAR for our disease. And wouldn't it be AWESOME if those with male/female pattern baldness get a treatment that works better for them? That's the most prevalent form of distressing hair loss, affecting who knows how many millions/billions worldwide? My son is only 30 and he is losing his hair to that right now. Picture of me (with a wig on) and my giant "baby" below, lol!
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Permalink Reply by dr. who on December 19, 2015 at 11:44am

thanks Xeljanzmiracle,  I appreciate the support :)  Ive been AU for 7 years, and areata for 8. I don't have any body hair,  not even one, kind of funny considering I already had beard when I was 14 years old.

Permalink Reply by Xeljanz2015 on December 19, 2015 at 8:49am
My doctor just told me yesterday that Xeljanz copay card is now $12000/year. They added $4000 to the cards this year on top of the $8000 that was given before, and next year starts $12000 in January.
I used a pharmacy here in CT and they Charge $25 to ship it overnight. It cost $2500 when I last filled in April. I heard of price increase, so not sure how much it's now. If you want I can look for my RX to give you their phone #
I'm now covered by my insurance and using their specialty pharmacy.
Permalink Reply by Xeljanzmiracle on December 19, 2015 at 10:12am
That's great news Xeljanz2015 that the annual co-pay card will jump up from $8,000 to $12,000 next month starting in 2016. That means 4 months of FREE Xeljanz for people who want to start it, while they try to get on Pfizer's free Hardship Program or are trying to work out denial issues from their existing insurance company. But even better news is that your insurance is covering Xeljanz 100 percent COMPLETELY! What is the name of that company? I'm sure everyone wants to know!
Permalink Reply by Susan McAdams on December 23, 2015 at 4:40pm
WhAt pharmacy are you using and what insurance do you have that covers Xeljanz for alopecia? I thought no insurance out there will cover the drug unless it is for RA.
Permalink Reply by Xeljanzmiracle on December 19, 2015 at 10:10am
Thats wonderful that you have some terminal (dark hairs) already. When my first spiky white hairs came in sticking straight out like a porcupine, I was wondering if they would ever turn dark, get soft and lay down. But as you can see from my pictures above, They did. As a Black woman, my hair grows out (like a FRO) not down, so I usually gel my hair to make it lay down every morning. That's why it may appear shorter than it it. But I get compliments on my growth from thousands of people in my community and church EVERYDAY, so I'm very pleased with my results. There are also friends who LOVED my bald look when I came out of wigs last April. They loved me bald more than the wigs they saw me in for 6 years straight, lol! Some of my friends told me to "stay bald" (especially the men) because they like that my features stand out more. I told one of them last month "Sorry Bro, the fro must grow", lol! Below are some pictures of me totally bald before my hair started growing back in September.
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Permalink Reply by Giusep on December 20, 2015 at 12:49pm
Hey all, I just wanted to post the latest picture of my wife's progress since being on Xeljanz for about 10 months. She has experienced 100% regrowth, including her eyebrows, eye lashes, and scalp.
Thank you all for your support. I am so excited for everyone having successful regrowth with Xeljanz. Also, anyone that experiencing slower result, don't give up!!! Xeljanz is not going to work for everyone, you just need to figure out what is trigger it for you.

Happy Holidays to all!!!
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Permalink Reply by kevin on December 20, 2015 at 2:00pm

Hello who is capable of answering to know if hair will not fall because it is very beautiful if hair grow what is what the king doctor is capable of answering you? What is that a small dose in stamp(tablet) added to the ruxolitinib cream can maintain the results(profits)?

Permalink Reply by kevin on December 20, 2015 at 2:07pm

It is the first question I ask myself before being able to begin the treatment(processing) because I want on no account that my hair grow and that on one year later all relapse cauchemard! It amazes me that none of you asked the king Dr that is the plan of matient after the shoot of hair

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