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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Replies to This Discussion

Permalink Reply by Juan on January 26, 2016 at 4:23pm

Same as the FLyest but I am in Venezuela

No money but willing to try.

Permalink Reply by Xeljanzmiracle on January 26, 2016 at 5:14pm
You guys are funny! Same info applies to you too, lol!
Permalink Reply by Juan on February 6, 2016 at 12:06pm

What is the info Xeljanzmiracle

Please help me and guide me please step by step to get the 12 months free. What Should I do if I am in Venezuela?

I would really appreciate

I am 26yrs old and Im universalis since I was 23

Permalink Reply by Xeljanzmiracle on February 10, 2016 at 12:55am
Juan, you get $12,000 worth, not 12 months. Go back and read my messages to Ujjain and Aurora. You HAVE TO COME TO U.S. to get it.
Permalink Reply by cmdd20 on January 26, 2016 at 6:28pm

Does anyone here know of topical Xeljanz working (I know ruxolitinib has)?  I heard from my derm that it was not effective but that was a little bit ago so may have been early on in a study.

Permalink Reply by Xeljanzmiracle on January 26, 2016 at 7:07pm
Yes, on mice, lol! See the study done by Dr. Christiano using Xeljanz and Ruxolitinib, which was published last October 23, 2015. Currently Dr. King is conducting trials on it and we have two forum members, Xeljanz2015 and Sp06, who recently started it and told us where they received the Topical X yesterday.
Permalink Reply by Stressedmom on January 26, 2016 at 9:42pm
My 13 year old daughter has AT and was on topical Xeljanz for 3 months received through this compounding pharmacy. Unfortunately we saw no growth so abandoned the topical and 7 weeks ago started oral Xeljanz. We are seeing some tiny hairs and very hopeful!

Chemistry RX was amazing but unfortunately we needed to go this route due to lack of response.
Permalink Reply by Sp06 on January 26, 2016 at 9:53pm
The cream showed no response at all? What about for the eyebrows at least? Maybe 2% tofacitinib isnt enough, i wonder if theyd try to make a higher percentage cream like 5%. Glad ur daughter is starting to see results with oral xeljanz at least!!
Permalink Reply by cmdd20 on January 26, 2016 at 10:21pm
Sorry to hear the topical didn't work but that's great news that she's starting to see some results. Best of luck to her.

I'm 3.5 months in, upped the dosage to 15 mg a day. Definitely have seen improvement but still a ways to go.
Permalink Reply by Stressedmom on January 27, 2016 at 5:56am
She had not lost eyebrows thankfully so we were using it only on her scalp. What we have learned is that everyone could respond differently to any of this so would not discourage someone from trying if that's what they choose. Initially we were compounding a month of pills but could only get a two week supply of cream from it and then they were able to find a more cost effective source to produce this. The pharmacy is amazing but we just didn't get the result. We ultimately chose the oral as the best choice for her at this time. She'll be entering high school soon and it's stressful!

Best of luck on travels to Istanbul. I feel like I've done so much and then I hear what others have had to do to find hope for a cure and I am reminded that the journey is a lifetime!
Permalink Reply by 3ebdie on January 27, 2016 at 7:12am

Hey. I am very happy that the Xeljanz pills work for your daughter!!

So you have been prescribed the cream by Dr.King as well? In that case I don't understand the fact that you had to provide the pharmacy with the pills to convert them into a cream. Sp06 for example just had to pay 350 bucks for a 30g gram. I am just asking to verify you have been using the same cream as the others on this forum. The name was:  Tofactinib 2% lipoderm base cream. Same as yours?

Permalink Reply by Stressedmom on January 27, 2016 at 7:39am
Yes same
Not Dr King though
We did this 6 months ago and the pills were used before they located the powder alternative

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