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 bibby on July 20, 2017 at 5:23am
Don't give up hope on medical advancement soon. Xeljanz is not the only kid on the block that has shown promise. Ruxolitinib has yet to be tested by users to the same degree as xeljanz. It may have a broader positive result specifically for our condition than xeljanz.
Permalink Reply by Patchesforlife on July 20, 2017 at 5:31am
Is it in clinical trials? What is current
Status?
Permalink Reply by Christopher's_mom on July 20, 2017 at 12:42pm

Northwestern University in Chicago is running a double-blind research project on what I believe is Ruxolitinib. My son is on Xeljanz and they said if he didn't have good results on it they'd enroll him in their new study which is a medicine different from Xeljanz, hence my hunch it's Ruxolitinib.

Permalink Reply by Milana on July 20, 2017 at 2:33pm
Thank you for your support bibby. You're right Xeljanz is not the only medicine of this kind. I was thinking of trying Baricitinib (not sure if I spelled it right) when it becomes available, and IF affordable. As far as I know Ruxolitinib is much more expensive than Xeljanz and that is a definite stop sign for me.
Permalink Reply by ChrisPowers on July 21, 2017 at 3:06pm

It is not my intent to rain on anybody's parade, but this recent study, brought to my attention by my dermatologist, does not bode well for Ruxolitinib:

"Aggressive Skin Cancers Occurring in Patients Treated With the Janus Kinase Inhibitor Ruxolitinib."

https://www.ncbi.nlm.nih.gov/pubmed/28628689

Permalink Reply by Suzie on July 20, 2017 at 1:18pm

Yes, why it works for some body hair and not the scalp is truly a mystery Milana. Like I said, I'm not totally convinced the Xeljanz worked for me or not. Before I started taking it, I did have some growth, so maybe it helped speed up the process, stop the shedding and stablize it or nothing at all. I know it has helped my RA as well, so I'm extremely thankful for that.

When I was a teenager my hair grew back on it's own WITHOUT ANYTHING...no steroid injections, medicine, supplements, etc. My mother just took me to our family doctor and he was at a loss as to what was causing the hair loss (this was 30 years ago, so I'm sure AA was not as common as it is today). The million dollar question is what triggers Alopecia? And how can we prevent it from happening in the first place?

Permalink Reply by Rascalx2 on July 20, 2017 at 6:42pm
I know mine was triggered from an intense, emotional incident which happened as I was coming out of a chronic stressful 2 year journey. I know for a fact that was how mine started... not to say that is what it is for everyone, but at the time I felt I was having a nervous breakdown, 3 months to the day I had a bald patch,.,, now if there was a way yo reverse that .., that is the million dollar question. To hear there is no way to reverse it ,is so defeating! I am being as patient as I can be w xeljanz, right niw it is only hope... cant believe how much i watch the peach fuzz. By the way, does everyone else have zero tolerance to cold water? With no barrier of hair I cant stay in ocean for more than few minutes.. sorry to ramble
Permalink Reply by Frida Rupert on July 20, 2017 at 7:30pm
I know my three AA experiences were started by infections inmy head area. Docs have said oh no probably not but exactly three months after I had a terrible jaw infection my first episode happened, it grew back fast, my second was after my wisdom tooth got removed and the socket got infected- wallah 3 months later there you go bald patches - again resolving quickly.... this time I got glandular fever plus an terrible middle and outer infection which ruptured my ear drum, three months later the great shed began..... this time it's basically all come out and is moving towards totalis - about to start Xeljanz but it's not show any sign of improvement like before despite the usual topical plus treatment with methotrexate, cyclosporine, prednisone so Xeljanz is the next step... I think everyone has different triggers- mine seems to be serious infection, other have a stressful incident or period of life, suffer a loss, and for some there seems to be no trigger at all. That's why this condition is so confusing and hard to reconcile- we don't really know why our bodies are doing this..... and if/when they will get better, if they will respond to meds or not..... if it means we are predisposed to other autoimmune conditions... etc... essentially it is an anxiety sufferers nightmare. Sorry for rambling too! It's a release to talk about it sometimes....
Permalink Reply by George Buckner on July 20, 2017 at 9:20am

Happy to hear.

Permalink Reply by George Buckner on July 20, 2017 at 9:23am

This Book help me a lot in regrowing my hairs. You can try this too http://bit.ly/hairlossblackbookS

Permalink Reply by Milana on July 20, 2017 at 2:36pm
Thank you. I will certainly take a look.
Permalink Reply by AlopeciaDestroyedMyLife on July 20, 2017 at 3:07pm
No this book did not help grow hair and please refrain from using this on my thread to trick people who are desperate.

Firstly, this is autoimmune alopecia not male pattern baldness. DHT has no relevance. The only scientifically proven treatments for male pattern baldness are minoxidil and finasteride that's it. Hair transplants only move hairs from one location to another.

I would also change the numerous errors in your article. Minoxidil for one does not block DHT and never has done.

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