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 DJ88 on February 9, 2018 at 3:35am

What would you consider a high dose? Like 10mg?

Permalink Reply by Frida Rupert on February 9, 2018 at 4:04am

Well on this site many are on 20 mgs a day. In the trials they said they raised the dose by 5 mgs, I think it was monthly after an initial period at 10 mgs per day. They raised it until response, side effects arose or insurance cut them off so I'm not sure average specific dose on the particular trial I read about as there was not a specific end dose reported.....

Permalink Reply by sadele on February 9, 2018 at 3:05pm

I had to go up to 20mg per day in order to see results. I saw best results when I stopped the medication for 6 months and re-started it. The secon "go around" I had 90% regrowth on my head within 4 months and lashes were filling in on top of both eyes.

Permalink Reply by singh on February 9, 2018 at 3:39pm

Hi Sadele do you still have regrowth ? Or have you stopped taking xeljanz ? 

Kind regards 

Permalink Reply by sadele on February 10, 2018 at 2:05pm

I had to stop in July because I became pregnant with our second child. I re-started xeljanz April 2017 and stopped July 2017 because of the pregnancy, however, in those 4 months I had almost complete growth on my head and lashes were coming in. Since I've stopped in July 2017, I've kept most of my hair except the top is thinning pretty badly. It's grown longer so I can wear a thick head band. I'm due in 10 days and plan on starting xeljanz as soon as I can. I lost the lashes and brows during the pregnancy but am very hopeful they will return once I start the medication again.

Permalink Reply by singh on February 12, 2018 at 6:21pm

Thanks sadele ! and good luck with your pregnancy and xeljanz  

kind regards 

Permalink Reply by Return_life on February 10, 2018 at 1:20pm

Same here... it's common with autoimmune disease that the second or third go around is more successful.  In the industry we call this as a naive patient. 

Permalink Reply by Newjack on February 10, 2018 at 1:22pm

Lol is that true or are you making a joke

Permalink Reply by Lindzzej on February 10, 2018 at 2:01pm

Return_life, are you being serious?

Permalink Reply by sadele on February 10, 2018 at 2:10pm

Regardless of his sarcasm or not, the second attempt after a 6 month break worked for me giving me much more growth at a much quicker pace. The first attempt at xeljanz took me 1.5 years and I had about 60% growth with no lashes or brows. 

Second time; 90%-95% growth within 4 months and lashes were coming in on top.

Permalink Reply by Newjack on February 10, 2018 at 2:12pm

@Sadele 

I am glad you have had great success. I am on 11mg XR right now and my hair is coming back in patches (i am at 5 weeks right now) It is coming back, but not nearly as thick.. Is that normal, or is that too early to tell? When I was younger and I would shave my head, my hair was probably more coarse than a brillo pad lol.

Is it normal for the begining stages for hair not to come in as thick and in patches?

I have had Alopecia since Sept 2017

Permalink Reply by sadele on February 10, 2018 at 2:34pm

I feel it takes time to ticken up, but eventually it will. Mine did. You might need to up your dose but that entirely up to you and your Dr. I have to take 20mg in order to see results. I was even considering going up to 25mg but didn't. 

The blessing in all of this is that are trials going on right now so there is hope in the future. 

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