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 Nickibee on September 7, 2015 at 10:39pm
Dr dy at rush dermatology!
Permalink Reply by Catharine on August 30, 2015 at 2:32pm

Thank you so much for posting this thread.  I signed up for this website a while ago but have never really used it.  I happened back because I came upon this thread through looking for information on people's success with Xeljanz for Alopecia.  I am a long time sufferer of RA who developed Universalis secondary to my RA ( I actually had a genetics profile run and found out how much sense that made because I carry some genes that have been linked to Alopecia. Looks like the RA made the conditions right for the gene to be activated). My hair began falling out about 9 years ago.   None of the medications that I've been on in that time has touched it except when I added prednisone to the mix.  Then I got some vellis regrowth.  As it happens that drugs I am currently taking weren't really cutting it and my doctor was considering putting me one something else.  His first choice kept getting denied by the insurance company I suspected because of how his assistant was filling it out.  

As it happened three months ago I went to see a dermatologist for a completely different reason.  She noted that I had Alopecia and referred me to her former clinical supervisor who specialized in dealing with auto immune related skin conditions.   I went to see him.  Turns out he is a friend of Dr. King's and is helping to back up his research. He said that since I was considering doing a new med anyway that I should go for the Xeljanz.  He called my rheumatologist who agreed to let me try it.  

After making doubly sure that my doctor's office filled out the paperwork correctly this time I was approved and start Xeljanz tomorrow.   I also got the co-pay card and am not paying a cent for it.  I realize how extremely lucky I am hearing about the struggles that everyone else has.  I pray that it gets approved for Alopecia soon so that everyone with it can try it.   I also hope that Baricitinib gets approved for RA since it has a safer profile then may after I have been on Xeljanz I can switch.   I truly hope that I have the same success as others here.  Not only with treatment for the Alopecia but also for my RA.     

  

Permalink Reply by Football fan on August 30, 2015 at 8:35pm
Well here I go again 4 months and one week (started April 22)and I'm pretty sure still losing the little bit of hair I have left! No New vellus hair on my head.All I have new is some terminal on my knees a few vellus hairs on my arms and my left eyebrow looks like it got about 8 to 10 terminal hairs (hard to tell because I have about 40percent of my eyebrows and tattooing.Going to see the Dermatologist Tuesday should I try some cortisone shots in my scalp(never worked before for me)and he didn't prescribe the xeljanz my endocrinologist did.
Permalink Reply by sadele on August 31, 2015 at 12:45am

I don't think it will hurt you to do the steroid shots. Have you considered doing shock therapy with oral prednisone? My derm and I considered that in conjunction with the 10mg a day of Xeljanz, but I opted to up my dosage to 20mg a day. It was two options and I choose to increase the daily dose. Also, maybe consider adding Plaquenile to your Xeljanz?

Just some options to talk to your derm about.

Permalink Reply by Football fan on August 31, 2015 at 1:52am
I would like to go on 15 mg but the price is a issue.Why did you not go up to 15 mg and see if that would work 20 mg sounds like a lot.
Permalink Reply by sadele on August 31, 2015 at 10:35pm

I've been on 10mg for 8 weeks and lost the majority of hair I had left, (the hair was there from injections, so we are not sure if this was the shedding cycle), but my derm told me to bump it up to the 20mg because that would determine within 3 months if Xeljanz was going to work for me. I'm on day 2 of the higher dosage and feel fine. I've had a few headache but nothing I can't get past. 

Permalink Reply by Xeljanzmiracle on September 1, 2015 at 6:37pm
EXCITING NEWS!!! Started Xeljanz a month ago and saw my FIRST PEACH FUZZ TODAY!!! To read my AU background go to my discussion called "Starting FREE Xeljanz for AU: My Background". I invite all to share in my journey and my JOY at seeing hair growth for the FIRST TIME SINCE 2009!!! Valeri
Permalink Reply by Starshine on September 1, 2015 at 7:42pm

So happy for you xeljanzmiracle.  I was just approved today for the hardship.  Their pharmacy is sending the first free dose on Thursday.  I have also upped to three pills a day and am now getting lots of growth.  

Permalink Reply by katiegirl on September 1, 2015 at 7:49pm
Fantastic news for both of you!! It seems like the three pills a day dose the trick. I'm back down to two and still seeing good growth so far :)
Permalink Reply by Xeljanzmiracle on September 2, 2015 at 7:52am
Thank you Katiegirl. It's WONDERFUL share the Xeljanz journey with others like yourself and Starshine.
Permalink Reply by sadele on September 1, 2015 at 8:01pm
Hi Starshine! How long were you on 2 pills a day and how long have you been on 3 pills a day? Are you doing any combination treatment? Or taking any particular supplements? I'm really excited to see the results of upping my dosage, I'm on day 3 of 4 pills a day and did two months of 2 pills a day. I check everyday for growth, which I know I should take a break from doing that but I'm anxious for something to happen!
Permalink Reply by Starshine on September 1, 2015 at 8:12pm

Katiegirl, how long were you on three a day. I have only been on three a month and was wondering how long to stay at three. I will have to go back to two eventually.
Serinaadele, I was on two for six months with very slow growth. I upped to three this month and have seen more growth in one month than the last six. I am also taking Plaquenil and just started getting cortisone shots last month.

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