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 ling tong on May 21, 2020 at 7:58pm

Thanks a lot! Will check with her dermatologist. 

Permalink Reply by Ahmexiom on October 29, 2020 at 11:55pm

Hi Nat 

Do you know how much should be taken and for how long ?

best 

Ahmad

Permalink Reply by Nat on October 30, 2020 at 6:23am

Hi Ahmad,

I was taking Prednisone 1week - 60mg/day, 1 week -50mg/day, 1week - 40mg/day and so on to 10mg, then repeat again from 60mg down to 0.

People do different protocols and they all seem to work.

Permalink Reply by Carlie on May 21, 2020 at 12:01pm
Another source, I have been told that they are now shipping again. I have not heard from Beacon so I'm checking other sources. If you don't want the generic, they have the Pfizer Xeljanz. 
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Permalink Reply by Merry on May 21, 2020 at 12:44pm

Thank you for finding this source. I never want to be at the mercy of  any insurance company again! As soon as I ordered from Beacon, they shut down. Someone on here loaned me two boxes, which was incredibly unselfish and kind, but I ended up losing all my hair, lashes and brows AGAIN due to the extended delay in shipping. I am so thankful for the people on this forum for providing information, encouragement and understanding. 

Permalink Reply by Joja101 on May 21, 2020 at 3:58pm

After 8 months and not much result on 20 mg Tofacitnib a day i'm getting off it. JMy most recent blood work showed my white blood cell count went down a lot. Below the average :(

Permalink Reply by Meedo on May 21, 2020 at 4:21pm

Hi joja101. Sorry to hear you haven’t had much luck with xelijanz . I believe you are seen by dr bordone ? What’s her view on you stopping the medication? Are you still taking 11mg extended release twice a day ?when you say you had no response do you mean absolutely nothing at all for 8 months ?? We’re you AU for long ?

Permalink Reply by ariel015 on May 22, 2020 at 10:39pm

Hi Guys!

Just wondering how long it has taken everyone with alopecia areata to respond to xeljanz?

Im on 10mg/day and its the second time I am trying it (I had to stop the first time after 1.5 months due to complications). It has been now 1.5 months at 10 mg/day and I have not seen any results and I am still getting new patches. I have lost about 80% of my hair and have had AA for the past 2.5 years if that helps :)

Permalink Reply by Anna on May 24, 2020 at 4:15pm

Hi ariel015,

A few things to think about:

1. Many people take months and months before responding - Dr. King believes that a good 20% pf patients don't respond in any meaningful way until at least 6 months in - you are still well within that time frame

2. 5mg twice a day is on the lower dosage end of things - possible to increase the dose at all? Many people have to do that in order to respond

3. There are a few people (myself included) who simply do not respond to Xeljanz. I took it for 11 months at doses up to 30 mg twice a day and did not get a single vellus hair - HOWEVER - I now have 100% regrowth on another JAK inhibitor (ruxolitinib)

These are a few things you can talk to your doctor about - but I would definitely consider upping your dose a bit to see what hapens.

Anna

Permalink Reply by ariel015 on May 25, 2020 at 10:17pm

Hi Anna,

I really appreciate your response! I agree it is early in the process, and I think the next time I speak to my doctor (in 2 weeks) I will consider discussing increasing the dose at some point. I should have mentioned that I have ankylosing spondylitis, so when I started xeljanz, I also started methotrexate (15mg/1x/week). Not sure if that will make any difference with if I can up the dose or not. Plus, I am 21 so my doctors seem to fairly hesitant with putting me on any stronger medication. I also live in Canada (I saw you mentioned this on another post) so I have to see if my doctor is willing to increase the dose or not, as he does not have much experience with patients on xeljanz for alopecia areata. Did you experience any side effects I should keep an eye out for when increasing your dose up to 30 mg? Just wondering if there is any potential risk with that.

Thanks,

ariel015

Permalink Reply by Anna on May 26, 2020 at 12:41pm

Hi ariel015,

I wouldn't think taking methotrexate at the same time would prevent you from upping your dose, but obviously your doc will make that call. I did not have any side effects with Xeljanz at all, though I DO have them with ruxolitinib (high cholesterol, fatigue, weight gain). Your doctor will continue to monitor your bloods, so if you do experience any side effects, you will be able to deal with them. But as I said - I had no side effects with Xeljanz.

Good luck and keep me posted!

Anna

Permalink Reply by ariel015 on June 6, 2020 at 1:21pm

Hi Anna,

I hope you are well! I just had an appointment with my doctor and he has agreed to let me try increasing my dose of xeljanz to 20 mg/day. That means I will be jumping from 10 mg/day to 20 mg/day. When you went onto your higher doses, did you go up in 'large' increments like this too? Or only up 5mg at a time? I just want to make sure what I am doing is safe and also isn't skipping a step. Also, do you suggest I wait until the 3 month mark on 10mg before upping the dose or start increasing it now (2 months in)? Sorry for all the questions, I just don't have anyone else to ask and want a few opinions on it before I change anything. I am really excited that he gave me the go ahead, though :)

Ariel 

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