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 Jckah on August 29, 2015 at 10:04am
Thank you for the response! That really puts my mind at ease. It's already not as bad as the first 2 days, but is still worrying me. Did they tell you to take or do anything or just play it day by day? I see my doctor on Friday, I'll make sure to let him know.
Permalink Reply by Toks on August 29, 2015 at 5:41pm
Hi am also in the meds have been for about three weeks and have been experiencing chest pain similar to what you described and it nice to know that it nothing "serious" and I feel it relieve either though I will be seeing my GP soon .....
Permalink Reply by Carlie on May 16, 2018 at 11:43am

Hello Toks,

We haven't heard from you in a long time and wonder how you are doing on Xeljanz. Are you still buying it in Turkey?

Permalink Reply by lusha22 on August 29, 2015 at 10:18pm
Ibuprofen- said it should take the inflammation away if there was any... I didnt end up taking it, but letting it run its course. I forget to tell you, they also ran a blood test to check for pulmonary embolism... It was negative!
Permalink Reply by DJ88 on August 28, 2015 at 5:55pm

3ebdie,

page not found in link

Permalink Reply by 3ebdie on August 29, 2015 at 4:17am

http://www.sciencedirect.com/science/article/pii/S2352396415000638

For those living in a country where Xeljanz is not approved the upcoming Jak1/2 inhibitor Baricitinib might be a solution in about 1 to 1,5 years time I reckon.

Xeljanz is mainly inhibiting Jak1/3 (also jak2 a little bit). This results in blocking il-15 (which signals through jak1/3) which is linked to Alopecia.

Baricitinib is only inhibiting Jak1/2. This results in blocking IFN-y (which signals through jak1/2) which looks to be highly elevated in alopecia patients.

The only problem with inhibiting jak2 is the chance of getting anemia. As EPO production is signaled through jak2. 

The advantage of baricitinib over Xeljanz however would be the safety profile. This will be much better as it's sparing Jak3 so you are disfiguring the immune system less.

Anyway exiting times ahead..

Permalink Reply by Sabri on August 29, 2015 at 6:01am
Baricitinib is currently undergoing five phase III clinical trials assessing its effect on disease response and safety. All trials are expected to be complete by March 2021.
Permalink Reply by AU1989 on August 29, 2015 at 7:55pm
Today is 9 weeks on xeljanz. I attached a picture. Its getting longer and darker on the top and sides. The back is still blond hair. Im getting excited but trying to also be realistic too
Attachments:
Permalink Reply by katiegirl on August 29, 2015 at 8:32pm
This is fantastic! Great to see this :)
Permalink Reply by Seahawks Dad on August 30, 2015 at 2:16am
Fantastic! I'm so happy for you and I know these initial results are the start of something amazing.

Thanks for sharing
Permalink Reply by Sabri on August 29, 2015 at 6:00am
Baricitinib is currently undergoing five phase III clinical trials assessing its effect on disease response and safety. All trials are expected to be complete by March 2021.
Permalink Reply by blyngrl80 on August 30, 2015 at 12:47am
Hi everyone! I am new to this board but have suffered from AA almost all of my life. I am very interested in trying xelijanz but want to work with a doctor familiar with the drug. Any recommendations in the Chicago area?

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