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 macdev on May 8, 2015 at 7:51am

hi

 they are 4(?)  JAk -inhibitors :

Tofacitinib (Jak -1 / Jak -3)

Ruxolitinib ( Jak 1 / Jak -2)

Baricitinib (Jak1 / Jak-2)

and

Oclacitinib (Jak1 and....?)

To my knowledge, only Tofacitinib anf Ruxolitinib are testing for AA , AU...

What about the others?

Oclacitinib is a breakthroug drug for dog's allergies and  it is very cheep / Tofacitinib and Ruxolitinib...

I did not found anything about Oclacitinib testing in Human 

....maybe a good direction...?

Permalink Reply by James 2me on April 22, 2016 at 4:04pm
Does anybody know how sucessful Xelljanz is in treatment for AU also is there any truth to the stories that it only works on younger people.
Permalink Reply by Jcortez05 on April 22, 2016 at 4:13pm
What do you consider younger people ? I'm almost 34 and was headed towards AT when I started and have growth everywhere and have been on 5 full months this week
Permalink Reply by Jc on January 2, 2019 at 10:28pm

I've been taking it for almost 3 months and NOTHING yet.  I'll try 1 more month. I'm devastated but can't keep putting all this poison in my body... wish it worked quicker but heard it doesn't last anyway...

Permalink Reply by Apple on January 16, 2020 at 5:46am

My UCSF doctor said to me give it a year. I’ve been in xeljanz since 2014, I have my life back.

Permalink Reply by Joja101 on January 21, 2020 at 9:22pm

How long did it take to work. I’m 4 months in and no results. 

Permalink Reply by Jc on January 21, 2020 at 10:57pm

I have been on xeljanz tofacitinib for 15 months. Started out with only about 25 percent of my hair left.  5 mg twice a day. Quite a bit of regrowth. I am a senior... however, as soon as I go to one pill a day I start losing my hair again..

Permalink Reply by Arun B on January 14, 2015 at 4:37am
Hey bud, my doc pulled up www.pharmacyhacker.com (canadian pharmas) and showed me a pharmacy pricing it at $2017 for 60 5mg tabs. Might save a few hundred going that route and it's still Phizer since they are the only Xeljanz makers (I believe). Did Phizer mention covering some costs, at all?
Permalink Reply by cws on August 25, 2014 at 7:19pm

That is great that you are seeing results on such a low dosage. I have been following this trial along with 2 others. I have also been able to start on Xeljanz. My derm and I have agreed to start slow at 5mg per day for the first month and monitor my blood for any side effects. I will be going to the recommended dosage after that and will stay the course for 3 months. If no results are seen by then, I will stop treatment. If I do get the same results Kyle Rhodes (from the Yale study) got, then we will try lower doses to find a suitable maintenance dosage once all hair has grown back. If you have seen results at 5mg every other day, then that might be a good starting point for maintenance. I know this drug has potential side effects, but I think if you can grow all the hair back and keep it via a maintenance dosage at a quarter of the recommend amount this drug could be quite safe for longer-term treatment. I also firmly believe there is a reasonable chance of remission if you can blunt the immune system long enough.

These drugs (JAK, abatacept) that have made the news for this disease are not accidents. All of these were discovered off the new science that came out of the 2010 Genome-wide study and we can thank Bret King for getting our first human example of it working. However, most of the credit for all this belongs to Angela Christiano and her work at Columbia University in uncovering the pathogenic mechanism of the disease. Now that the science has been proven outside of the mouse model, the studies are ramping up. I think everyone should be watching the trial for Abatacept (Orencia) as it has a long know safety profile and is an immunomodulator. The science is catching up and this recent bout of news is the biggest thing this disease has seen in 20-30 years.

I will update on my progress with Xeljanz as well. I am AU and have been for the past 2 years. I just started the meds this past Saturday.

May remission find us all.

Permalink Reply by AlopeciaDestroyedMyLife on August 25, 2014 at 7:52pm

Best of luck cws 

let me know how its working out, would be good to compare

Permalink Reply by DJ88 on August 26, 2014 at 12:32am

Hi,

Im hearing this thing is out now and is a bit expensive. Any idea how much it would cost with insurance? Could you find out somehow?

Permalink Reply by cws on August 26, 2014 at 8:36am

It is very difficult to get insurance to cover this as it is not FDA approved for alopecia. It is an off-label approach and is a biologic ($$). Because it is an expensive drug insurance companies are quick to decline coverage until it is an on-label med. With that said, many people will be having to pay for this all on their own and it is expensive. Larger studies will have to be done in order for it to be FDA approved for alopecia. I am not sure how the risk/ benefit fits into the equation for the FDA. 

There is also a study on abatacept (Orencia) at Columbia University that has a long-term safety profile and might also hold a lot of promise for this disease. If it shows similar results I foresee that being one of the first meds to be approved for alopecia by the FDA. The whole process feels very slow, but with all the news on the breakthroughs things might now start to move along a little faster. I think if nothing else, they should be getting a cream out for the JAK inhibitor class of drugs. 

For the record, I hate insurance companies and I think that if you have a doctor who is willing to prescribe it then it should get covered.

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