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.

-----------------------------

AW:  Other discussions on Xeljanz / Tofacitinib

https://alopeciaworld.com/main/search/search?q=Tofacitinib

 

Views: 927903

▶ Reply to This

Replies to This Discussion

Permalink Reply by Seahawks Dad on July 30, 2015 at 4:19pm

Thank you very much for helping all of us...has anyone had any luck with any Canadian Pharmacies? 

Permalink Reply by Life_sucks_with_alopecia on July 30, 2015 at 3:20pm
I have attached a pic of the box from Turkey.

My progress has been slow on the 2 pills a day hence Dr.King telling me to increase the dosage to 3 alongside the Prednisolne.

Dr. King said I have some fine hair on my scalp and on .y eyebrows but it's not as successful as some others on the site. I've just completed 3mths on the 2 pills and will start the 3 pills this weekend. I really hope this kick starts things for me as I don't want to lose hope.
Attachments:
Permalink Reply by singh on July 30, 2015 at 4:12pm
Thanks mate! And Yeh man don't lose hope! Hopefully it will work! Am looking to start soon and I have suffered with AA for 18 years then now last few months gone AU. So I think will need more than 3 months and probly 3 pills a day too. All the best and keep us updated :)
Permalink Reply by HS on July 30, 2015 at 4:20pm

I started Xeljanz on July 2nd and I have vellus hairs all over my head!!! I take 10 mg per day. A few days ago I noticed light eyelashes on both my top and bottom lids too!

I have hair in my nose, all over my face, a few eyebrows, I've seen a few hairs on my arms. It's definitely growing and it's VERY exciting!

 

Permalink Reply by singh on July 30, 2015 at 5:31pm
That's amazing heather! May I ask how long you have had Alopecia for? And what sort of alopecia?
Permalink Reply by AlopeciaDestroyedMyLife on July 30, 2015 at 8:21pm

I've been taking Xeljanz I got in Turkey for about 2 months now. My boxes are exactly the same as LSWA's .

I noticed hairs are coming out with no bulb which may just be normal shed but it did start when I started taking the Xeljanz tablets I got from Turkey. As a whole I haven't noticed any significant loss and it looks no different.

I went for a scalp massage 2 weeks ago and must have lost about 90 hairs which scared the life out of me. I am currently in contact with Pfizer who have asked me to provide a sample . Will let you all know what the results are .  

What may also play a role is that I have stopped taking the Minoxidil which has been known to cause shedding if stopped. Recently I have been losing less hairs daily (around 30)

I've been having some paranoid phases this month but I will post new pics shortly.

Permalink Reply by TM23 on August 1, 2015 at 12:21am

Same thing happened to me earlier. My pattern baldness triggered due to head massage. Had worst experience of my life - Spa staff gave me dry head massage and I lost more than 100 hair since then I started loosing hair :(

Permalink Reply by Scott on August 3, 2015 at 5:48pm

Hi ADML

Thank you for posting about your experience in regards to purchasing Xeljanz from Turkey. I will be interested to hear what Pfizer have to say about the sample you provided.

I live in the UK and asked a Turkish friend who lives over here to contact a few of the main pharmacies in Istanbul and inquire if Xeljanz was available, but none of the pharmacies could find information on it.

Permalink Reply by HS on July 30, 2015 at 8:27pm
I have AU since 1999. Prior to that I har AA for 25 years.
Permalink Reply by singh on July 30, 2015 at 9:24pm
Thank you ha! Look forward to your updates!:)
Permalink Reply by singh on July 30, 2015 at 9:40pm
Was doing some research and came across this article! Everyone read this! Gives me hope! Can see they are defo on the right path for a cure and better treatments! If you can't open it try typing in on Google.

http://nahrs.org/InTheNews/RecentMeetingsSummations/AlopeciaAreataR...
Permalink Reply by Mike on July 30, 2015 at 9:41pm

How much were the round trip flights to Turkey? I would figure the average price from the United States would have to be well over $1,000. 

RSS

Disclaimer

Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.

© 2024   Created by Alopecia World.   Powered by

Badges  |  Report an Issue  |  Terms of Service