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 AU1989 on July 30, 2015 at 9:07am

Have you been approved for the hardship card yet ?

Permalink Reply by AU1989 on July 30, 2015 at 9:07am

Hi- Anyone actually get the hardship approval and funding yet ?

Permalink Reply by Football fan on August 4, 2015 at 2:21am
Hi any news on the hardship card yet katiegirl? This drug is a hardship for almost any income!
Permalink Reply by Fenster on July 22, 2015 at 10:44am

Hey there, 

Does the hardship card only apply to those over 18 similar to the copay card?  My son is 13.  Also I've been away from this board for a bit... Can we all here unscientifically estimate a pattern for those with the greatest success. My son lost all of his hair, eyebrows etc 2 years ago.  Every new day I worry the longer he waits, the less chance the meds will work...  What I mean is are those with the great success here completely bald, how long have they been at 100 percent hair loss, or have partial hair ?  thanks all

 

Permalink Reply by singh on July 21, 2015 at 7:49pm
That's fantastic news chubs!! Does this mean if FDA approve this for Alopecia the cost will be a lot less? And what was Dr king saying about the safety profile? Thanks :)
Permalink Reply by Chubs on July 21, 2015 at 8:05pm
Don't know but if approved for use insurance companies more likely to approve- long term effects - not known since it is a relatively new drug- that always scares me but it was my son's decision- we both agreed this is not something he wants to be on forever- Pfizer may be working on topical form of drug to eliminate potential side effects from oral use - all rests in clinical trial results and FDA
Permalink Reply by singh on July 21, 2015 at 8:53pm
Cool thanks for the update chubs! I've heard they are doing trials with several jak inhabitors with baricitinib being one of them. If it shows good results hopefully it will get approved its cheaper and the side effects are safer.
Permalink Reply by Football fan on July 22, 2015 at 2:23am
Kyle Rhodes did he lose all his hair? Did it start falling out immediately after stopping xeljanz? Did he try a lesser dosage?So many questions!
Permalink Reply by HS on July 30, 2015 at 1:30pm

that's sooooooo awesome to see!!!!

Permalink Reply by TM23 on July 26, 2015 at 3:35am

Alopecia totalis/universal and male pattern baldness are completely two different things. 

Any progress on male pattern baldness patients ? Most of the pictures and progress in this forums are not related to MPB.

Permalink Reply by Jckah on July 27, 2015 at 3:37pm
Week 2 on 10mg a day and the fuzz is getting longer, and I can see a few brow hairs and one eye lash. The arm and leg hairs haven't fallen out, and the tired/brain fog feeling is gone, I feel good!
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Permalink Reply by singh on July 27, 2015 at 4:07pm
That's amazing start! Happy for Ya!

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