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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Related Post on Alopecia World:  

Xeljanz / Tofacitinib

Olumiant

Jak Inhibitors

 

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Permalink Reply by raffaella saccardo on December 27, 2015 at 4:37pm

Yes. Exactly.  The price in Croatia is 4.850 euro

Permalink Reply by dr. who on December 27, 2015 at 5:58pm

 1300 eur, http://www.ilacrehberi.com/v/jakavi-5-mg-56-tablet-ec50/ in turkey , going there could save you some money, and i guess it´s only 2 hour flight from italy

Permalink Reply by raffaella saccardo on December 28, 2015 at 6:24am

Thank you very much for the information and for the link in Turkey. Happy New Year !!!

Permalink Reply by Merry on December 27, 2015 at 7:08pm

I have been on xeljanz since March, and I have been slow to make progress, but thankfully, I have seen some regrowth. There is hair sparsely growing all over my scalp, on my face, and my lashes are returning. All the regrowth is impossible to see without proper lighting and/or mascara. I'm pretty happy to have something to put mascara on though. Here are some pics from today. 

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Permalink Reply by Football fan on December 27, 2015 at 7:42pm
Hi Merry everyone is finally responding I hope to be next I started the end of April.For the last month I have been on 3 xeljanz and 2 plaquenil a day. What are you taking?Odd thing everyone on this site says they get more colds I haven't been sick one day since I started xeljanz and my whole family has had multiple colds.Good Luck!
Permalink Reply by Merry on December 27, 2015 at 9:11pm

Footbal Fan, I was on 2 Xeljanz  per day for 6 months with no progress other than improved fingernails. Then I went up to 3 per day for one month with no results. I started 4 per day September 9 and started seeing a few hairs around the first of Novemeber. My hair has continued to grow in length, but it is very fine and nearly transparent. I have actually been taking 5 per day since November 24th. I will continue on 5 per day until I see my doctor again in April. My insurance would only pay for 2 per day at first, so my doctor wrote me two prescriptions for 2 per day. I would send one through my insurance and use the card from the drug company to pay for the other prescription which my insurance wouldn't pay. My doctor and I didn't feel like that was cheating because insurance wouldn't pay for the amount I needed. However, my insurance has recently approved 4 per day. I have been very fortunate and only had to pay for the meds once which was before I met my deductible. I wish you luck and hope we can all  cosmetically acceptable results. May 2016 be our year!

 

Permalink Reply by Xeljanzmiracle on December 28, 2015 at 7:52am
Congrats on FINALLY responding Merry!!! That was a long, 9 month wait but you have begun. Im so happy for you! Are those lashes on the BOTTOM I'm seeing? I dont have any bottom lashes visible yet- I think. Let me go check in the mirror, havent looked for awhile, lol!
Permalink Reply by Sara on December 28, 2015 at 12:31am
Hello
Can anybody help me I can't understand what's the differance between prednisolon and tofacitinib
I gave prednisolon to my son (8 year old with alopecia universalis ) all hair came back
But after stopping it again all fell down . I read the same story here
With xeljanz !!
So what's the differance ?
I feel disappointed ...
Permalink Reply by Football fan on December 28, 2015 at 1:20am
It seems like you have your 2 xeljanz a day responders and then there is the other half who has to try multiple options to find something that works.Weird it doesn't matter if your AU or AA there's some of both in each.I thought I was going to respond quickly because I still have hair which isn't the case.Would love to try the cream but not sure how to go about getting it made.Would be ideal to help jump start the growth or for those who have resistant spots.I feel like we're being kept in the dark about the results of the trials.Hope in 2016 we will learn more about the trials and be able to get our hands on that magic cream!
Permalink Reply by Xeljanzmiracle on December 28, 2015 at 8:20am
From the almost 2,000 replies I have read on here Football Fan, the MAJORITY are responding to Xeljanz alone. Its definitely not 50/50. We did receive the Interim Trial Results from Yale and Stanford stating that: "Xeljanz is safe and efficacious". I think they were posted on p. 140 of this thread. Bottom line: Xeljanz works effectively without adverse side effects for most people.
Permalink Reply by Xeljanzmiracle on December 28, 2015 at 8:31am
Hi Sara. Prednisone is a steroid that supresses inflammation and our immune systems. Tofacitinib is a JAK inhibitor that turns off the distress signal our hair follicles send that they are being attacked. Therefore our hair grows back. However, if either of them are discontinued, the hair will fall out again. Neither one is a permanent cure; they are both treatments.
Permalink Reply by Joao Piva on December 28, 2015 at 8:27am

Hi!!

I´m from Brazil and I´m using it since the end of April.  Xeljanz really works, but you must check your blood chemestry every month.

So far so good!!!  Hair started to get back right after the 3rd week and I´m really excited with the results.  My only worry is after the treatment... will all that new hair fall again.  (This doubt is the worst side effect).

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