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 katiegirl on March 11, 2016 at 9:13am
Sadele, even compared to the last picture you posted I see a vast improvement. The hair you have appears darker and thicker. I would definitely see about speaking with dr king about switching to the other jak inhibitor if it is affordable for you though perhaps you will see better results. At least you know that these jaks work maybe it's just a matter of switching!
Permalink Reply by Starshine on March 11, 2016 at 9:11am

I have now been on Xeljanz for one whole year.  Hopefully my pic will upload.  Almost full regrowth,but still mostly white and the sides  are still a little thin, but overall I have had a good response.

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Permalink Reply by Football fan on March 11, 2016 at 2:00pm
Hi Does anyone remember if Ruxolitnib and Baricitnib are Jak 1 and 2 vs xeljanz that is a jak 1 and 3.And also does anyone know when Baricitnib will be coming on the market?I think sometime this year and if I'm not mistaken isn't it suppose to be closer to a $1,000.Some of us that aren't responding well to xeljanz might do better with Baricitnib and it will be cheaper than Ruxolitnib.
Permalink Reply by chris_s on March 11, 2016 at 4:20pm

the usual source I see for trials (ncib) doesn't show anything in the works for baricitinib. 

http://www.ncbi.nlm.nih.gov/pubmed/?term=baricitinib+alopecia

it's "out there" but not even at the place that xeljanz currently is (which is for all intents and purposes not ready for market for alopecia) 

Permalink Reply by kimberj on March 11, 2016 at 9:49pm

That is fantastic!! Rock the white hair girl. It looks great on you!!!

Permalink Reply by Starshine on March 13, 2016 at 9:25am
Thanks Kinberj, I am on the fence about keeping it white, but for now I am going with it.
Permalink Reply by Beth on March 12, 2016 at 10:10pm
Starshine,
Love your look with that pretty flower in your hair! Congratulations on your new hair growth, so happy for you. Thank you for posting results and timeline for growth.
Permalink Reply by Starshine on March 13, 2016 at 9:27am
Thanks Beth, it started slow, but it finally got there. Are you on Xeljanz now?
Permalink Reply by Beth on March 13, 2016 at 10:16am
Starshine,
I am very interested in potential treatments for androgenetic alopecia because my 17 year old daughter has it. The last year has been very hard. I have hopes that the Topical forms of the jak inhibitors will work on AGA,because the dermatologists doing the research hinted as much. I communicate hope to females with aga that there may be new treatments in the future.They do not have support group/ naaf type organization in which to communicate
Permalink Reply by Football fan on March 13, 2016 at 12:46am
You started off slow but your hair did grow!Are you still on 3 xeljanz and 2 plaquenil?Was your original hair color light you look very fair. I wonder if you could use a mild semi permanent color that has no peroxide.Susan from the Standford trial put blonde highlights in her hair and it looked great.Is everything back to 100 percent yet and are you going to try and taper off anything?
Permalink Reply by Starshine on March 13, 2016 at 9:34am
Hi Football Fan, thanks, yes, you know I also struggled at first which is why I always tell people it takes time. I know in your case it just does not seem to be responding. Have you thought about emailing Dr. King and asking his advice. I emailed him when Xeljanz first came out and he responded right away. He is very nice and understanding and might be willing to give you advice without seeing him. You may need one of the other JAKs. Yes, I am fair and my hair was blond. I have thought about coloring. For now I am staying on 3 pills a day, but I am cutting back the Plaqienil.
Permalink Reply by HS on March 21, 2016 at 11:05pm

oh my gosh I'm SOOO happy for you!! this is wonderful. Beautiful!

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