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 Frida Rupert on July 10, 2019 at 7:06pm

Hi Device561 - yes I use generic. I used Pfizer for the first few months and then switched to generic, all of my hair growth has been on a generic version from Bangladesh. There are a few different ones out there but Beacon is the best for buying from overseas and has been tested in a lab as having the active ingredient at a reasonably close dose to the original.

Permalink Reply by Devices561 on July 10, 2019 at 7:25pm

Many thanks Frida!

Permalink Reply by MindOverMatter on July 29, 2019 at 6:14pm

Hi, What tests have you had done on these tablets to confirm that they are safe to take?  ...and more to the point how or who carried out these tests on the generic tablets? Thanks.

Permalink Reply by Meedo on August 30, 2019 at 4:06pm

Hello mind over matter. I have been following your posts since I live in the Uk and I’m in the same boat as you. I’m impressed with your determination and I had the same thoughts before I even discovered this amazing blog couple of weeks ago. I live in oxford and I have sent you a friend request. I would like to know all the blood test details like what to ask for and also if you took any vacinces prior to starting X coz I will go to the same labs you are using . Many thanks mate 

Permalink Reply by Mashloum on July 8, 2019 at 10:47pm

Anas%20Lab%20Result%20Statistics%20Jun%202019.xlsx

My son Lab test for the last 4 years, for the AU vs Xeljanz for the last 17 months impact

Permalink Reply by magmck on July 9, 2019 at 1:54pm

Hi Mashloum

I was so pleased to see your sons progress on Xeljanz! You must be thrilled. 

Have the doctors helped you understand what

the results mean?  . 

Permalink Reply by Chi_Loss on July 9, 2019 at 2:44pm

Hi! I have been using this forum for a while to educated myself on my alopecia and treatment options. this is my first time posting. I have recently joined a clinical trial for CTP 543 and it is the least amount of exclusions that I have seen.  I live in Chicago and am participating in Indiana. I encourage you all to check out the study and the trial locations. This is a dosing study with no control group so everyone gets the drug if they meet the criteria. If you are in the midwest i would encourage you to check out Indiana as they still have many spots open. if you are currently on a biologic or immunosuppresant you are excluded but if you have been clear for 3 months it looks like you are ok...but pls call to verify and good luck and kindest regards!

https://clinicaltrials.gov/ct2/show/NCT03941548?term=ctp-543&ra...

Permalink Reply by Kathy on July 9, 2019 at 9:32pm

I think my dr at northwestern is in that study. When I asked last year they said you had to have 60% loss, is that still true? Have you experienced any results? 

Permalink Reply by Chi_Loss on July 10, 2019 at 7:10am

It is at least 50% loss for this one 

Permalink Reply by Devices561 on July 10, 2019 at 8:39am

What kind of drug is the study being done for? Another JAK inhibitor?

Permalink Reply by Chi_Loss on July 10, 2019 at 11:14am

ctp-543 which i believe is a jak inhibtor.

Permalink Reply by Mashloum on July 10, 2019 at 4:48pm

Hi Magmak, unfortunate the doctor here has limited exposure for these results, considering that my son is AU and he still not yet adult, but I am doing my best to consult for the deficiency shown especially for Iron and V.D.  as well the TPO

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