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 Football fan on September 2, 2015 at 11:54am
I am not going to give up!I hope someday I can post pictures too!You made my day!
Permalink Reply by AlopeciaDestroyedMyLife on September 2, 2015 at 1:11pm

You will , I'm sure of it :)

Permalink Reply by AlopeciaDestroyedMyLife on September 2, 2015 at 1:11pm

Thanks Starshine 

Permalink Reply by singh on September 2, 2015 at 12:04pm
That's amazing man!! So happy for you! :)
Permalink Reply by Seahawks Dad on September 2, 2015 at 2:44pm

ADML...so happy for you and sharing your journey. Persistence pays off...and I'm so thankful for your help in starting this conversation. It lead us to Dr. King...and hopefully full regrowth for my daughter.

Permalink Reply by Lori on September 2, 2015 at 2:44pm
Amazing so happy for you!
Permalink Reply by Jckah on September 4, 2015 at 12:22pm
Update (picture attached): I was going to wait until the 2 month mark next Tuesday but I just took a picture and had to share. Also, ignore the slight blood, I just got home from getting my injections. Eyebrows and lashes are coming in too but no color so I can't get a picture of them.

Im not going to lie, the past two weeks have been tough. I experienced some chest tightness which scared me but it went away on its own after a few days. All my blood work and vitals are normal so Dr. said to just let him know if it happens again and I'll get some tests done. Last night I woke up with severe pain in my abdomen, I really thought it was going to be a hospital visit but I fell back asleep, woke up, drank some apple cider vinegar and a tone of water and now it's gone. My Dr. felt around and thinks it may have been my gallbladder, so again just gotta let him know if that happens again. I feel alright now, just tired.

A pharmacy technician messed something up with my copy card in the system, so I couldn't pick up my xeljanz until the pharmacist got someone from Phizer to ok it...yea...so I haven't taken xeljanz last night and this morning...I'm waiting on the call now so I can go pick it up. Let's see if any shedding happens.

On a positive note, I was approved for the hardship program and Phizer is fed-exing me my bottles now! They said it should be here by this afternoon! finally being a poor college student is a helpful thing :p
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Permalink Reply by Xeljanzmiracle on September 4, 2015 at 12:55pm
Yaaa for the hardship program!!!
Permalink Reply by Michelle on September 9, 2015 at 11:33am

Did you receive your prescription for Xeljanz from your dermatologist or another  doctor? Who authorizes the lab work that has to be done? My son's dermatologist wrote the prescription so I am unsure where the orders for lab work come from...and most derm offices do not have a lab, so would we go to a outside lab every time or could we go to our Primary Care Physician? So many questions does anybody have a answer?Thank You for any help.

Permalink Reply by Xeljanzmiracle on September 9, 2015 at 12:29pm
Call your son's dermatologist (office) and ask them.
Permalink Reply by Michelle on September 9, 2015 at 1:15pm

Thanks, I will, they never call me back. Just thought I could get your experience with your labs.Congratulations on your regrowth, I know seeing that is a real uplifting and exilerating feeling.I can't wait for my son to exper ience those feelings  after suffering for 13 years.

Permalink Reply by Xeljanzmiracle on September 17, 2015 at 8:12pm
Thanks. My dermatologist sent the order for my blood work to a separate lab electronically. Then the lab sent my results electronically back to the doctor.

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