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 okan94 on July 14, 2018 at 6:06am

How much your cortisol and ACTH levels in blood tests ?

Permalink Reply by Frida Rupert on July 14, 2018 at 8:46pm

Hi Okan, don’t know the numbers but I do monthly and bi monthly when steriod pulsing. Only ever had one bad number (liver related) as the docs always just say all good or no good and I really only look at thyroid number due to hashis. I am actually kindof surprised my bloods have been fine because I damaged my kidneys due to eclampsia after my sons birth. They got the function back - had dropped to 50% but then came back up to 90% which is Normal for my age and no pro s on my meds - even during pulsing.

Permalink Reply by okan94 on July 15, 2018 at 5:26am

Hi frida,My cortisol level has dropped 11 times since I started.Cortisol level fell from 11 micrograms to 1 microgram in morning.They suspect the pituitary glands and they will test next week.

Permalink Reply by Frida Rupert on July 15, 2018 at 6:55am

Yes - cortisol can be problematic wirh steriods. Have you started pulsing yet? That’s the biggest risk with steriod use is that it can screw up your pituitary gland, but I would be surprised if xeljanz alone would do that.  I really hope everything is ok- if you need you could always take a break from everything and then restart after everything normalises - some people seem to get better results by stopping and restarting.... let us know how you go. 

Permalink Reply by okan94 on July 15, 2018 at 11:50am

My doctor did not let me use steroid together with xeljanz.So I could not start using steroid yet.I use ldn with Xeljanz.They will start testing on Monday with Synachten 0.25 mg

Permalink Reply by Carlie on July 15, 2018 at 11:11am

Hello Okan, my Functional Dr. who believes in the homeopathic route had me taking cortisol. I think my levels were low before I started xeljanz. When I first saw her she ran a bunch of blood work, everything, and mine was low. I will check it and let you know what it was, what I took and where it is today. 

Permalink Reply by okan94 on July 15, 2018 at 11:57am

Thanks charlie.I hope it's a side effect of xeljanz.My cortisol level is very low but also ACTH level is low.ACTH approximately 10.73 pg/ml.In any case,it seems as if I need to get to steroid treatment.

Permalink Reply by Carlie on July 15, 2018 at 12:20pm

I just checked, my level dropped from 21.6 in 2016 to 13.8 in 2017 before I started Xeljanz. That's probably why I was told to start taking cortisol supplements. I don't know what it is today. 

Permalink Reply by okan94 on July 15, 2018 at 1:11pm

I did some research,cortisol level can be decrease in weak immune system.I think that's our problem.I don't think it's a problem with my pituitary glands or adrenal glands.

Permalink Reply by Carlie on July 15, 2018 at 3:12pm

I wonder though, do we want a weak immune system or strong? Isn't it our overactive immune system that's causing this problem? How do we untrigger the attack? Xeljanz stops the lead attackers and steroids stop them all.

Permalink Reply by okan94 on July 15, 2018 at 4:24pm

Our immune system is not strong,it works wrong.For this reason we are alopecia patients.Xeljanz is a potent immunosuppressant.Suppresses the immune system and prevents the Jak signal from attacking the hair.

Permalink Reply by DJ88 on July 15, 2018 at 4:08pm

Hey guys,

What do you think is better? Xeljanz 5mg twice a day or should i go with 11mg once a day?

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