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 Frida Rupert on September 17, 2018 at 7:36pm

Hi DJ88- from my understanding any medical doctor can give you a script but if you are looking for insurance to cover it then a specialist may be necessary. Maybe an immunologist? Im

aurprised the derm was a no go as they seem to be the most frequent prescribers on this forum.

Permalink Reply by kevin on September 25, 2018 at 11:18pm

hi frida here are my results since the last time I am 7 months for two months I vary between 15 and 20 mg it starts helped I will resume a cure betamethasone I stopped after two months. my health is good and my blood work too. I received 2 boxes of tofacinix from India the French customs let it pass I will have it appraised by a labaratory

Permalink Reply by kevin on September 25, 2018 at 11:21pm

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Permalink Reply by kevin on September 25, 2018 at 11:22pm

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Permalink Reply by Frida Rupert on September 26, 2018 at 3:24am

Looking good Kevin - the hair is getting thicker and darker.  It’ll be interesting to see the lab results for the Tofacinix - All my progress was pretty much when I started those so I am pretty sure it will come back good. Great to see progress and another pulse might be helpful to kick it along a bit- as long as bloods are good and you feel ok.

Permalink Reply by JG on September 27, 2018 at 10:00am

Hi Kevin! How many days it took to get pills? I ordered and don’t know for how many days count to receive.

 Thank you!

Permalink Reply by kevin on September 25, 2018 at 11:19pm

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Permalink Reply by Beth on September 25, 2018 at 1:13pm

I need help - I have AU since October 2016.  I started on Cyclosporine Nov. 2017 and stopped Aug 15, 2018 aprox 6 months. In that time I had some hair growth on my head very patchy and the meds gave me joint pain.  May 1, 2018 I was approved for Xeljanz  5mg 2 daily.  Results were very great hair was growing back everywhere! Patchy on my head now I have a hairline all the way around and full body hair including eyelashes (bought mascara for the first time in 2 years)  and eyebrows.   I noticed this week that my hair was falling out yet AGAIN?!?!  Has anyone experienced or heard of this?  I'm thinking I should up the dose to 15 mg daily.  

Input is welcome 

   

Permalink Reply by Frida Rupert on September 26, 2018 at 3:30am

Beth- I’m sorry you are going through this- ugh- set backs are so hard. Lots of people on here, me included are on 20mgs with great blood results so I think it would be something to think about. Also maybe talk to your doctors about a short steriod pulse- either iv or high dose minipulse. Kat on here had a small relapse and she pushed through and came out the other side with most of her hair intact- she has lovely thick hair- and it still looked lovely and thick after the set back. Try not to think about this as a total relapse- just a bump in the road- I think, with a few adjustments to dose etc you will ride through it and be growing back the hair you’ve lost in 3-6 months.

Permalink Reply by Rascalx2 on September 26, 2018 at 1:11pm

Im AU, 20 mg xeljanz brought back hair. If I drop down to 15 mgs it starts to fall out. Shots helped w pulsing, but now i have spots in back and one on side of dime sized and quarter sized patches. It is stable somewht as it is not continuing to fall out or shed. But spots have gotten to be more stubborn. As long as it is not progressing w shedding Im ok with it as is. I have not had shot in months and am not planning in it, feel that it starts to lose effectiveness. But increasing xeljanz to 20 mgs will probably help, 

Permalink Reply by Shad on September 26, 2018 at 1:55pm

Hi where you can get 20mg from? Im thinking to increase but it’s so pricey and can’t pay monthly for it . Thanks 

Permalink Reply by Beth on September 26, 2018 at 5:53pm

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THANK YOU FOR your responses!!! I just went to the Derm. Today which they are not that versed with Alopecia but I did up my dosage from 10 mgs to 15mgs. I’ll start there . The doc said at 20  One is more susceptible to the side affects. I read 20mgs is pretty much the max .. is that correct?  Also, Has anybody had a hard time growing hair on the top of their head? See pictures 

thanks again 

Beth 

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