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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Replies to This Discussion

Permalink Reply by Brock on March 5, 2019 at 6:28pm

Well said and thanks for the support!

Permalink Reply by Frida Rupert on March 1, 2019 at 9:00pm

It’s still not working for me (the reply button)... definitely think it’s the inflammation from the infection, which will pass. I can’t remember if you ever did a steriod pulse, though problematic if you have active infection. My best guess is this will pass in three months once the hair cycle restarts. Just keep getting better, reduce stress, and you’ll be back to 100% again in no time. I get how anxiety inducing this is. My shed continues but I have a really thick second lot of hair coming in - like it’s coming in all over the scalp so I’m wondering if it’s some weird hair cycle thing for me. You’ll beat this - I know you will- just let your body heal and xeljanz will do it’s job! Don’t worry - I often ramble to my own posts too! Lol two of a kind eh!

Permalink Reply by kevin on March 3, 2019 at 11:33am

20g pfizer a new publication on a tryed on the medical clinic, il y a eu une embolie pulmonaire à prendre au sérieux, je vous laisse le lien, moi pour 6 mois à 20mg je descends a 10 mg, pour les gens comme newjack suivis par les spécialistes du xeljanz regard le docteur.

Je vous donne mes nouvelles que j'ai repousse de cheveux médiocres malgré 20 mg et de béthamétasone, j'ai récemment fait deux injections de disque en kénalog sur le crâne, étrangement c'est que les cheveux se débattent parce que les sourcils de la barbe des cils pubiens ont presque 100% and the hair 30%
je vais au baricitinib, la posologie est à 2 mg par jour, avec une dose plus élevée peut causer une embolie pulmonaire

https://www.biospace.com/article/high-dose-of-pfizer-s-xeljanz-raises-red-flag-in-a-post-marketing-study/

Permalink Reply by kevin on March 3, 2019 at 11:49am

I have been on xeljanz for 1 year and at the age of 7 I had alopecia I have period in my life or I had regrowth the last date 9 year 21 ans , i have 30 year

Permalink Reply by kevin on March 3, 2019 at 11:54am

I have a friend who is under tofacinix beacon for 2 months it 70% of small hair cover it takes 3 per day as tofacinix is dosed at 4.2 mg

Permalink Reply by Jc on March 4, 2019 at 7:22pm

I keep reading about all the great news. I've been on xeljanz for 4 months and now I am starting to see hair but I keep getting eye infections. Does anyone else have side effects?

Permalink Reply by mastros on March 5, 2019 at 2:42am

Luckily didn't have side effects, yet is common to be a more prone to infections. I think from my experience it takes time for your body to find its balance. For instance, I was feeling a bit tired in the beginning for a week and when I increased the dosage again I was with less energy than usual for a week.

Permalink Reply by Frida Rupert on March 5, 2019 at 3:32am

hi JC, I had eye infections during the beginning of my immune suppressants regime (I went through methotrexate and cyclosporine before getting onto xeljanz). I found this problem totally went away once my eye lashes grew in. I think the body adjusts to the meds to a degree but when your lashes come in I think they will offer a bit of protection. Haven’t had an eye infection for over a year now. 

Permalink Reply by Rascalx2 on March 5, 2019 at 3:36pm

Anyone hear of side effect of possible pulmonary embolism with RA study? When taking 20 mgs.

Permalink Reply by LJBMD on March 5, 2019 at 4:01pm

Yes. It’s concerning 

Permalink Reply by Newjack on March 5, 2019 at 4:13pm

How are the studies with baricitnib

Permalink Reply by kevin on March 5, 2019 at 5:18pm

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