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 Patchylatchy on October 21, 2018 at 10:54pm

Hi Sarah congrats. Was allegra recommended for alopecia?

Permalink Reply by SarahJean on October 26, 2018 at 11:03pm

Yes it was recommended by my dermatologist for the alopecia. He stated that he's seen it help. You can buy it over the counter but he prescribed it and my insurance covered it. I received the generic version, fexofenadine hydrochloride tablets 180 mg. Have not yet ordered the biotin, plan to get it on Amazon next payday.

Permalink Reply by Beth on October 22, 2018 at 1:38pm

Another positive story - I LOVE HEARING THEM!!!  

There are a couple different kinds of Allegra... what works best. 

Permalink Reply by Cri1964 on October 23, 2018 at 10:11am

After 3 years alopecia universale and 8 months of xeljanz i have all my  hair again . So happy !!!   

Permalink Reply by NicoleT on October 23, 2018 at 10:12am

Yahoooooo Chri1964!!!! Amazing!!

whats your daily dosage? 

Permalink Reply by Frida Rupert on October 24, 2018 at 6:13pm

Great news! So happy for you!!!!!!

Permalink Reply by LuLu on October 23, 2018 at 10:39am

I’ve been taking Xeljanz 10mg daily about half year, I had 90% regrowth in last month, but now I am start shedding again, just wondering is there anything I can do to stop shedding other than increasing dosage? 

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Permalink Reply by Frida Rupert on October 24, 2018 at 6:13pm

hi LuLu- perhaps a steriod pulse? I hope it all works out and the shedding stops!

Permalink Reply by Frida Rupert on October 24, 2018 at 6:24pm

Hi guys- a quick update- 10 monthes of growth - about 15 monthes on xeljanz- 100% back- though it came back curly (pic is after i I tried touse a straightener so it’s much curlier normally) and a bit lighter - Ian eternally grateful to this med, my doc, and this website.

for details on dose and other things I used you can pm me.

side- effects- weight gain and initial acne which calmed down heaps after the first 4 monthes. While I do have anxiety, this is much less onxeljanz then in the depths of my Alopecia. No probs with sleep.

49298838-F241-49E9-8F05-CDEC27521DD2.jpeg

and eye close up for lashes/brows (I am wearing makeup - mascara and liner.

i suffered from quite bad nausea before these meds throughout my twenties and thirties  - never diagnosed with anything related to that but on these meds this has disappeared so I feel healthier on then off to be honest. That’s probably not the norm but I am grateful for that too

6456DB49-BE02-4BD6-9953-4FA88933A97C.jpeg

Permalink Reply by Shad on October 24, 2018 at 9:02pm

Woww, happy for u Frida, u look so pretty!!  Hope mine grow back too it’s so slow on 15 mg but after 10 years of No hair I guess will take longer and much slower than you guys. 

Permalink Reply by Frida Rupert on October 25, 2018 at 2:40am

Thanks Shad- stick with it- this med needs patience and the right dose to work. The fact you have hairs sprouting is great, I do think it will thicken up. I am so so grateful for this med, and also for this forum for giving me the information I needed to get my result. I am very hopeful for non- responders that something that works for them will be available soon.

Permalink Reply by Rascalx2 on October 25, 2018 at 1:53pm

Hey Frida, I know theres something going on!

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