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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Related Post on Alopecia World:  

Xeljanz / Tofacitinib

Olumiant

Jak Inhibitors

 

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Permalink Reply by IcarusAlopecia on February 7, 2017 at 9:16am

That's interesting. I'm seeing my eyelashes go from blonde to black. That hasn't happened in a year or two since I lost them.

I do believe the cortisone shots work. The only reason I started xeljanz was because the circular bald spots I have been treating for years became so frequent that It was time to up the treatment. I'm confident with the shots and Xeljanz I can get this under control.

Are you shedding still on Xeljanz?

I've noticed my shedding has increased. (I'm also under a lot of stress...buying, selling and moving house). 

Permalink Reply by Xeljanzgirl on February 7, 2017 at 10:15pm

My lashes and eyebrows were the very last thing to begin re-growing - it took almost a year to see substantial eyelash growth. Goodluck!

Permalink Reply by Katrina on February 8, 2017 at 8:43am
Thanks for keeping me hopeful :)
Permalink Reply by Nicolas on February 13, 2017 at 6:42pm

what said dott king to you? you'll stay on it all the life or in time you will take less and less?

Permalink Reply by Katrina on February 7, 2017 at 9:20am
The only time I notice "shedding" is when I shampoo and look at my hands. I always see 2-15 hairs on my hands every shower. My derm says this is normal but it freaks me out.
Permalink Reply by IcarusAlopecia on February 7, 2017 at 9:23am

I hear ya!!

It totally freaks me out. Like I can actually feel the stress when I see it. I'd gather my shedding is a lot more, 20+ hairs.

I'm going to try to not look, I guess.

Good luck! Your progress looks fantastic.

Permalink Reply by Nicolas on February 13, 2017 at 6:38pm

Any news of the man opened this discussion? 

Permalink Reply by Nicolas on February 13, 2017 at 6:43pm

At the moment noone important sides effect? what said dott king?

Permalink Reply by Katrina on February 21, 2017 at 11:37am
Sharing an update:
26 year old female. No personal or family history of alopecia.
9 months since becoming AU (hair loss was rapid and diffused)
6 months since starting Xeljanz (10mg, then 15mg, now 20mg)
Regrowth is great but slow.
Got my 3rd serious sinus infection since starting Xeljanz- each one lasted a week.
Thought weight gain was due to Xeljanz, but realizing it might have been from Lexapro, which I stopped taking 3 weeks ago. Already seeing an improvement in weight.
Also got my first round of cortisone injections 3 weeks ago- definitely saw a boost of regrowth from them!
Will continue to post updates in hopes that they comfort someone...
Hang in there everyone <3
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Permalink Reply by singh on February 21, 2017 at 12:53pm
Wow amazing Katrina! So happy for you ! Keep positive ! Also I have heard people who don't have alopecia shed about 100 hairs a day anyway. And it's a 3 month cycle. Keep us updated :)
Permalink Reply by Suzie on February 21, 2017 at 2:06pm

Good for you Katrina!  I, too, have had some success.  51 yr. old female (AA 3 years ago - with several patches and thinning).  I also have RA, so I've been taking Xejlanz (5 mg twice a day for approx. 4 months) for both auto immune diseases.  Fortunately for me I was able to get away with hair extensions, but costly and bothersome.  Most of my patches have filled in...hoping by the end of the year to be able to not have the extensions in.  I will post pictures of before and after soon. Along with the Xeljanz, I also take supplements (Viviscal Professional twice a day, Biotin, multi vitamin, evening primrose oil, ultra hair vitamin and Vitamin D.).  I also have been doing the igrow laser hair treatments at home for about 2 months.  It's hard to pinpoint exactly what is working and

what is not, but I'm going to continue to do everything I've been doing cause it seems to be working.

Permalink Reply by mtran2000 on February 21, 2017 at 6:07pm

Wow 20 mg a day, does your insurance cover the cost?

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