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 sultan h on January 19, 2017 at 8:52pm
Sounds good
Do you have another picture for your hair??
Permalink Reply by Merry on January 19, 2017 at 9:38pm

I'll try to take some pics in the morning before my hair is mashed down by my wig. 

Permalink Reply by Return_life on January 20, 2017 at 12:33am
u mentioned 10mg a day and also upping the dosage. please provide details about dosage u took from start
it took 8 months for you to respond to the treatment?
Permalink Reply by Merry on January 20, 2017 at 9:43am

No, I take 10mg twice per day for a total of 20mg. I started out at 5mg twice per day but got no results. After 6 months, my dosage was increased to 15mg per day, and after 2 months at this dosage, I began to see regrowth. Then a few months later, my doctor increased my dosage to 20 mg per day because my insurance started to pay for it. I have been at that dosage for about a year now.

Permalink Reply by Rascalx2 on January 20, 2017 at 11:05am
I was taking xeljanz 10 mg a day for 4 months with no results. Since increasing dosage to 15 mg a day, I have activity with fine peach fuzz. I have been alternating 15 mg a day and 20 mgs a day for the past month. I dont see myself taking this long term. Its only hope right now and Im forging through. I still have a hard time accepting this. From some of posts Ive read on here, it must be worse to grow it back then it starts to fall out again. I remember my hair was thick and had to cut it every 3-4 weeks..., what the hell happened?
Permalink Reply by Return_life on January 20, 2017 at 4:03pm
thank you. this is really appreciated.
interesting that it took u 2 months at 15 to see regrowth... this is the kind of data we need to understand how to treat the disease.
Permalink Reply by Merry on January 21, 2017 at 11:34am

Here are some recent pictures of my regrowth. The first is my lashes and brows. The next is the front of my hair. It also shows that my forehead tends to break out with blackheads now more than before Xeljanz. The last picture shows the back of my hair. In the photo it looks like there is no hair on the crown of my head, but it is actually just very thin with two quarter sized bald spots.

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Permalink Reply by sadele on January 21, 2017 at 3:05pm
Wow Merry! Look at those lashes!! I'm so happy for you!
Permalink Reply by Starshine on January 22, 2017 at 4:31pm
Hi Merry, you are getting there! Don't give up. It doesn't matter how long it takes, you are making a lot of progress. I think adding Plaquenil really helped me also. Mine got slowly thicker as time went on. Not everyone responds at the same rate, but you are definitely getting there!
Permalink Reply by Patchylatchy on January 19, 2017 at 9:10pm
Interesting you say allegra. Do you thibk it works?
Permalink Reply by Merry on January 20, 2017 at 9:46am

I don't think it would be nearly potent enough to cause regrowth by itself, but it could decrease inflammation slightly which could boost regrowth in someone already taking Xeljanz.

Permalink Reply by HS on January 20, 2017 at 11:11pm

Hi Everyone, I'm posting some pictures of my growth. First a little history of me. I was first dx w/ Alopecia Areata age 14, which stayed Areata until age 39. Then progressed quickly to AU. I have tried practically everything: DNCB, Cyclosporine, etc.

I started Xeljanz on July 2, 2015. 5 mg 2x a day. I fist saw hair within a month. Growth was very slow, so my doctor added Plaquenil 400 mg. a day in June 2016. That really moved things along for me. I also get cortisone injections every 4 weeks on scalp and eyebrows. I've had a few scares where my hair started shedding A LOT but it was usually the white hair that initially grew in. In the last couple of weeks my hair has been falling out a lot. I'm hoping that stops! Here are some pictures.

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