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 William on September 7, 2016 at 10:34am
Yes, I believe certain people here have had a relapse and experienced regrowth after upping the dosage. Please share his answer with us. Good luck!
Permalink Reply by strawberry on August 18, 2016 at 10:02pm

Should I stop taking my birth control pills before going on Xeljanz? I don't know how well the two mix together.

A few more questions:

(1) Some people aren't responding to Xeljanz.. I find this really upsetting :( Is it just that their immune system is too strong? Do they have other health issues? 

(2) Those of you who gained weight on Xeljanz.. is it difficult to lose? If you keep to a strict diet and exercise regime, can you prevent it from happening?

(3) I'm sure it's been bought up before and we don't really know the answer for sure.. but how long can one really stay on Xeljanz? I think ADML has been on it the longest at ~2 years. Xeljanz is quite new, so I'm just wondering about the future and long term effects.

Thank you.

Permalink Reply by HS on August 19, 2016 at 11:38am
Hi Friends-
I wanted to share my update.
Background-I started with AA at age 14, got AU at age 39.
Tried all sorts of treatments.
I began Xeljanz July 2, 2015.
I was one of the slow responders but I did not give up.
In May 2016 my doctor added 200 mg plaquenil and I started getting scalp and eyebrow injections. I also use Latisse.
Since May, my hair has stated growing like crazy! I now have lots of dark patches all over (in addition to all my white hair.) I have all my eyelashes, I'm 90% eyebrows, andi have to shave my legs and underarms.
Don't give up folks!
Permalink Reply by Xeljanzmiracle on August 19, 2016 at 12:16pm
Congratulations HS! How long before u saw ur first hair regrowth on Xeljanz only?
Permalink Reply by James 2me on August 19, 2016 at 5:24pm
It's a little bit Frustrateing looking at the white patches growing in sections on my scalp getting tired of wearing hats but on the bright side there's more everyday and 6 weeks ago they were barely noticeable. It's crazy how the eyebrows are comeing in black though. Oh well I guess patience is the Key comeing up on 6 months of Xelljanz.
Permalink Reply by HS on August 26, 2016 at 6:48pm

Hi, Once I started Xeljanz in July 2015, I saw tiny white hairs on my scalp within a month. But I was a VERY slow responder to the medication. After 10 months with very slow growth (white hair everywhere, but some of it also fell out) my doctor added Plaquenil. It was the right choice for me.

Permalink Reply by James 2me on August 19, 2016 at 12:25pm
Congratulations very exciting. Sometimes it seems to take longer nobody is the same. What was YOURE Xelljanz Dose thanks for shareing YOURE story.
Permalink Reply by Barbara on August 22, 2016 at 2:52am

Hi HS,

I have a question for you: Injections? With what medication?

I have another question for all: does Plaquenil work for you?

Thanks.

Permalink Reply by Merry on August 22, 2016 at 12:10pm

Injections are steroids, usually Kenalog. They can be given in the resistant areas but must be repeated in many cases. Plaquenil seems to have helped some people when taken with Xeljanz, but I don't think it made any difference for me.

Permalink Reply by Suzie on August 22, 2016 at 2:12pm

I am not on Xeljanz, but I am having a colonoscopy done and will have anesthesia.  I noticed someone had hair shedding after the anesthesia.  Has anyone else experienced this?  I am nervous to get this procedure done now because I don't want any more excess shedding.

Permalink Reply by Jcortez05 on August 22, 2016 at 3:10pm
Hi Suzie, it may not happen to you .. Losing all of your hair from anesthesia isn't the normal .. It just happened to me but I also has under severe stress and had just given birth .. But this time around it was just thinning very bad so I shaved it . I can now monitor the regrowth better and I still do see hair growing in.. I'm on plaquenil 2.5 weeks on that and I stopped xeljanz last week
Permalink Reply by Suzie on August 22, 2016 at 3:33pm

Thanks Jcortez05.  I have RA and was on Orencia and stopped it about 8 months ago because I was shedding and thought it was triggered from the Orencia.  You never know what is going to trigger it.  I first developed AA when I was a teenager and it all came back on its own (before I had RA).  I developed RA after I had my second child and the AA just came and went and it was not even noticeable.  I had been on Enbrel and Humira both for years and not really an AA issue until 2 years ago when I started Orencia.  I have numerous bald patches that just won't fill in.  I have tried steroid shots and cream with little luck.  I am going to the Mayor clinic in Minnesota at the end of the month and hopefully will see if there is anything else out there other than Xeljanz because I am so leary about starting another biologic.  My RA is bad, but not as bad as it has been without being on any drugs.  I have been taking many supplements: Biotin, Evening Primrose Oil, Fish Oil, multivitamin, Ultra Hair vitamins with MSM, another hair supplement that has Choline and finally  Tumeric.  Not sure if that is slowing the progression of my hair coming out, or if it is even helping at all.  I just felt like I needed to try to do something.  I was on Plaquenil years ago. Are you taking folic acid with that, because Planquenil can also cause hair loss as well.  That is the problem with some of these medications.....they all can cause other damage and hair loss. UGGH! 

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