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 Shad on January 30, 2018 at 11:47pm

Do you live in USA? Cause I'm in Canada but can't get medicine by post. 

Permalink Reply by Divya on January 31, 2018 at 8:18am

Any1 who has stopped Xeljanz and loss hair due to discontinuing the medicine.. 

Permalink Reply by sadele on January 31, 2018 at 9:34am

Mose people who stop experience hair loss.. you should go through the threads on this website and you'll learn about everyone's experience on and off the medication.

Permalink Reply by sultan h on February 1, 2018 at 5:21pm

Hey guys 

do you agree that Turkey xeljanz much better than US xeljanz ? 

My experience I had before turkey xel more effective thank us xel

please share you experience 

thanks

Permalink Reply by Frida Rupert on February 1, 2018 at 6:42pm

I think they are the same. If hey are both xeljanz then  presumably they are chemically identical as they are both produced by Pfizer. If not produced by Pfizer then there maybe differences but if the dose of active ingredient is the same I think they should work the same imo. Admittedly I don't use xeljanz from Turkey.

Permalink Reply by Carlie on February 1, 2018 at 9:38pm

I've read through many pages of threads and sometimes people disappear. Maybe because their hair has grown back and this site is a sad reminder of when they were struggling. I'm beginning to think that nothing really fixes the problem if your AU or AT. I think if you find something that works you'll more than likely need to continue taking it for the rest of your life. If your using Xel then you should be prepared financially or at least until they come out with something more affordable. I've learned a lot about all the different drugs that sort of work so I think I will try to start there. I feel very sorry for people with cancer and transplants, the drugs that work the best are horribly expensive and the insurance company's will only cover a fraction of some of them. Even if I can get my insurance to cover xel I will still be out of pocket about $1100.00 a month for 5mg twice a day. It's very frustrating.

Permalink Reply by Patchesforlife on February 1, 2018 at 9:41pm

Dani wrote a discussion here she was AU and then she stopped takint xeljanz and hair didnt fall. Dr Brett told her she os in remission. check her discussion on front page

Permalink Reply by Frida Rupert on February 1, 2018 at 10:58pm

Carlie- are you based in the states? I'm in Australia so it's not accessible here but I've noticed a lot of people discussing xelsource which gives you the meds free (I think) if you meet the financial criteria. Also there was mention of some scheme at CVS that allows you to get 3 months worth a year for free. In your case that might save you 3k a year...

Often if you have people who are willing to send it to you from overseas you can get it even cheaper but,'of course, is tricky and I strongly recommend you have a proper prescription and investigate the personal medication importation laws of your country.

The patent expires, I think, in 2020. Hopefully it gets much cheaper but I can't encourage people enough to research research research to find the most affordable option for you.  I HATE this saying as I love cats (and all animals) but "there's more then one way to skin a cat" applies in this situation. 

I really want to write a help sheet for people in our situations to help them get access to the meds but I am hardly qualified, plus I don't want to burn any bodies supply chain. It's sounds terrible but in most countries there are personal importation schemes that allow you to import if you have a valid script from overseas suppliers. It would be wonderful if there was a list of suppliers, prices, insurance options, legal import restrictions etc to help everyone get access to this med at the most affordable price in a totally legal way... ok sorry for all the serious chit chat but I really want people who want treatment to get it regardless of financial circumstances....

Permalink Reply by Carlie on February 2, 2018 at 1:39am

Thanks Frida, I think I'm kinda resourceful and get what your saying. I will look more closely at my options and maybe the doctors at UCSF will be able to do more. I am a fighter and will continue to seek the best available resources. Unfortunately, it takes time before one realizes that the general practitioners, dermatologists and immunologists, know less than we do and the key is finding one who specializes in Alopecia.

Permalink Reply by Frida Rupert on February 2, 2018 at 1:53am

Yeah I agree. I wish I could do more to help but often it so country dependent and I am unfortunately only totally aware of the Australian situation.  I really hope you find a good and economical source and the most important thing of all is a doctor who is on your side totally.  Lots of doctors don't know and don't seek to educate themselves either whereas there are some great ones out there that will bend over backwards to try and help and actually seek out answers and opportunities for you.  I just get so heartbroken when I read about people who are already so traumatised with the condition getting traumatised more when they try and get the proper meds and treatments.

LOL I wish I was a rich pharmaceutical baron who could be like "xeljanz for all alopecians free of charge"  ( a picture of me laughing while I throw bottles of xeljanz into the air) but alas I am far from that. I think really sharing our experiences is the best way to help so that's why I'm a motor mouth on this site (also I am just a chatty sort of person generally).  Fingers crossed it works out for you and you aren't $1100 out of pocket a month...

Permalink Reply by Frida Rupert on February 2, 2018 at 3:53am

Ok guys- progress shots- the first is from January 15 th (which I shared recently) and then again yesterday. In two weeks the growth is starting to thicken and turn darker. I look a bit like a brindle dog- undercoat is white with the tips slowly turning brown (I am naturally a mid to dark brunette - personally if it comes back green I'm still happy) it's a bit patchy and there's some spots that I think will need steriod injections but I'm pretty happy with progress. I'm still a while off from looking like a non alopecian girl who's just decided to go super short but the progress is starting to be quite encouraging....once I get to full coverage stage then I'll post only every month or so. So first pic is two weeks ago and second and third are from yesterday. Slow but steady progress! Good luck and good growing to all xx

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Permalink Reply by Newjack on February 2, 2018 at 7:58am

Congrats Frida, you've been on xeljanz 15/20 mg for 7 months correct?

How are the brows? Were they ever effected?

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