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 Carlie on March 10, 2018 at 3:06pm

There are 517 pages of posts here alone. Start on page 1 and read them, you'll learn a lot. 

Permalink Reply by Newjack on March 10, 2018 at 4:45pm

Before Alopecia I would routinely get sinus infections. I feel one coming on now. I don't know if I should feel excited or not because the medicine is working and making me normal. Every 4 months I'd get a sinus infection and get anti biotics up until 4 years ago till I started doxy for acne and 6 months ago I'm here today. 

Weird 

Permalink Reply by TMB on March 10, 2018 at 6:34pm

Hi everyone...

There is a new clinical trial out there being sponsored by a pharmaceutical company called Consort.  They are sponsoring clinical trials in 35 states around the country to get FDA approval for a drug that will hopefully be better and safer than Xeljanz as it is being specifically formulated for moderate to severe alopecia areata.  I was selected to participate in a ckunical trial here in Florida.  I begin the trial this coming week. You can find out more about CP-543 by googling Consort Pharmaceuticals.  I hope for all of us alopecians out there this will not only be a better and safer drug because it specifically formulated for alopecia but also that it could be a cure for all if us who suffer from the horrible condition which to date has no cure. :)

Permalink Reply by mtran2000 on March 10, 2018 at 8:59pm

I believe the company is Concert pharmaceuticals. I hope they find the cure.

Permalink Reply by Kathy on March 10, 2018 at 9:13pm

I just sent an email to the company asking to be a part of the trial. Should I also contact my dermatologist? 

Thanks for this information 

Permalink Reply by TMB on March 10, 2018 at 9:46pm

You are welcome.

You can also go to www.clinicaltrials.gov and look for clinical trials and locations for CTP-543.

Hopefully there is a location near you and you will be accepted. But remember a clinical trial does not always guarantee the drug.  The placebo can be received instead.  I am sure hoping I will get the drug and not the placebo.

Permalink Reply by Kathy on March 10, 2018 at 10:16pm

I sure hope so, keep us posted and good luck!

Permalink Reply by mtran2000 on March 11, 2018 at 6:39am

CTP-543 looks to be very promising as it specifically targets alopecia unlike Xeljanz which is more for rheumatoid arthritis and a general immune suppressant. For all forum members that get on the trial, please keep us posted with your progress should there be any.

Like everything, works for some and not others. 

Permalink Reply by singh on March 11, 2018 at 8:18am

Hi TMB, 

could you find out if it’s only for AA or can it be used on AT, and AU? 

Kind regards 

Permalink Reply by TMB on March 11, 2018 at 11:01am

Hi Singh

I can't speak 100% on this but, the clinical trial guidelines are only moderate to severe alopecia areata. Greater than 50% hair loss.  Participants must be between 18 and 65. There have been ongoing clinical trials sponsored by Consort.  If you Google Consort clinical trials for CTP-543 you can read about and see photos.  I saw one photo of a male participant who appeared could be AT or AU.  Also I would assume "severe" would include AT or AU

Permalink Reply by TMB on March 11, 2018 at 11:06am

Singh, ere is a good amount of info on the Consort trial:

The clinical trial is being conducted by Concert Pharmaceuticals, Inc., to study a new treatment called CTP‐543 in adult patients, age 18 to 65 years, with at least 50% hair loss. The study will determine if CTP‐543 is safe and effective in treating hair loss in patients with alopecia areata. Patients must have a diagnosis of alopecia areata and have an ongoing episode of current hair loss lasting between 6 months and 10 years. Patients should not be taking medicines to treat hair loss or medicines that alter their immune system. Patients will require blood work to make sure their organs are working normally and are not at risk when taking CTP‐543. Additional study entry requirements will be confirmed at the participating trial sites.

If patients are eligible to participate in the study, total time in the study will last up to 32 weeks (11 visits to the trial site), and up to 24 weeks on treatment. The study will look for changes in hair loss by testing CTP‐543 compared to placebo (a sugar pill) for 24 weeks. Study visits will occur every 2 to 4 weeks.
Changes in hair loss will be checked every 4 weeks and blood will be taken every 2 to 4 weeks for safety monitoring and research. CTP‐543 is similar to ruxolitinib (Jakafi) and may also have similar side effects. If you or someone you know is interested in learning more about this clinical trial, please click here for more details.

 

At least one of the following trial sites are in your area and may be contacted for more information:

Suzanne Bruce and Associates, Houston, TX
Investigator: Suzanne Bruce, MD
Phone: (713) 985-0210

Contour Dermatology & Cosmetic Surgery Center, Palm Springs, CA
Investigator: Timothy Jochen, MD
Contact: Daniel Rangel; Phone: (760) 423‐4000

Minnesota Clinical Study Center, Fridley, MN
Investigator: Steven Kempers, MD
Phone: (763) 502‐2941

Northwest Dermatology, Portland, OR
Investigator: Janet Roberts, MD
Contact: Heather Cook; Phone: (503) 223‐1933 x 105

Siperstein Dermatology, Boynton Beach, FL
Investigator: Julian Mackay‐Wiggan, MD
Contact: Stacy Stankiewicz; Phone: (561) 364‐7774

Permalink Reply by Kathy on March 11, 2018 at 2:38pm

Yesterday I emailed the supervisor listed on the site about participating since Northwestern and my Dermatologist is involved. They responded today and said this round is currently full but to contact the doctor directly for future studies for this drug. 

I was impressed with the quick response! 

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