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 AlopeciaDestroyedMyLife on July 13, 2015 at 5:16pm

The trial results have not been very successful on 1 pill  a day. Growth started happening at 2 pills. 

It was enough however to stop my alopecia spreading. 

Permalink Reply by PA44totracon on July 14, 2015 at 10:56am
How many months have you been on the full dose of two pills. I remember you started the trial with one pill every other day for a month or two then one pill a day for a few weeks. I know you said you have been on Xeljanz for a full year but how many months on the full daily dose?
Permalink Reply by AU1989 on July 14, 2015 at 9:06am

So I am AU for 2 years and AA off and on for 20 years. I have been on 300 mg prednisone pulse monthly for two doses today and I've been on xeljanz via Dr King for 7-8 days.  I think the pulse is creating some peach fuzz on my head and beard. Is this like vellus hairs. There are not a tone but 20-30 on my head but no consistency.

Permalink Reply by Julie on July 14, 2015 at 12:44pm

I've been on the standard 2 pills a day of xeljanz for four and a half months now. I grew my eyebrows back after the first 6 weeks and then noticed vellus hair on my arms and legs and a lot more on my head. I got cortisone injections on my head about two months ago and have full terminal hair that is about an inch long all along the top of my head where I got them. I wanted to wait and post because I've gotten the shots before and initially the hair would start to grow but after a few weeks it would fall out. It's definitely doing well and continuing to grow though! The sides of my head by my ears are starting to fill in and I am just now seeing a few dark patches of terminal hair on the back side of my head. I got a few more cortisone shots last week in the back and am hoping that will help move things along back there. I have tried so many different treatments and have gotten my hopes up so much so I have been really, really tentative about getting my hopes up but I think this could be doing the trick. :)

Permalink Reply by Mike on July 14, 2015 at 6:30pm

I just joined this site. I just read through all 57 pages of comments and responses and am optimistic that this will work for me. I have had alopecia universalis since December of 1980 when I was just 12 years old. It's tough enough just being a kid sometimes, but to have it happen when I was in 7th grade was very 'challenging'. I feel for the most part I have persevered through it, but even to this day have a lot of 'anger' in me and have never let what happened go. I wanted to see what everyone thought was the first best step to approach a local dermatologist about prescribing this, or should I just talk to my personal physician (personal friend too). I have to at least try this and feel for the most part at now 47 and having no hair anywhere on my body that I have nothing to lose (obviously would have my blood and health monitored while doing this). I pretty much had given up on ever having the possibility of having real hair again ( I have always worn a wig and now use hairclub), however I like to look at things very positively and feel that even though it's been over 35 years I now have a chance to have hair and finally get to shave one day :). Thanks for any advice and input.

Permalink Reply by User33589 on July 15, 2015 at 8:13pm
Does the xeljanz copay card only work for on label use? I spoke with a rhuem willing to prescribe but she's convinced even with the copay card I won't be able to receive the drug unless it's actually being used for RA...also, has anyone gotten this prescription covered by insurance? Either fully or partially? My doctor is more than willing to help me but we don't really know how to go about it
Permalink Reply by katiegirl on July 15, 2015 at 8:22pm
I am using it for off label use and the copay card does in fact work . it was as easy as giving it to the pharmacy and getting it covered by the card. My insurance is not covering unfortunately so this will be my first month paying out of pocket
Permalink Reply by User33589 on July 15, 2015 at 9:52pm
Did you have to be denied by the insurance company first before you were able to use the copay card? Or was it as simple as taking your script and card to the pharmacy and them giving it to you?
Permalink Reply by katiegirl on July 15, 2015 at 10:20pm
Well I gave them the script. Insurance denied me right than and there so I gave the copay card. Had my script the next day
Permalink Reply by katiegirl on July 17, 2015 at 1:26pm

Hi all -

So I am not sure if others are aware of this. But .... the initial copay card I used ran out (the 8k one). So I did some hunting and decided to call the manufacturer of the med. I spoke with a woman about my situation and told her I already used up the copay card from online. She told me about ANOTHER copay card for 10k which is called the "hardship card." She asked me five questions to see if I was eligible (are you a us citizen? how much do you make a year? I said 65k although I make more because I wasn't sure what the cutoff was, do I have medicaid?). She told me I was in fact eligible for the copay card my doctor just needed to fill out an authorization form. Long story short - I was approved and am having the card mailed to me. So I now have another few months of free xeljanz. Hope that this helps anyone.

Permalink Reply by Starshine on July 17, 2015 at 2:35pm
Thanks Katiegirl, that is great. I knew about the hardship thing, but thought you had to be really poor to get it. Did they send the form to you or directly to your doctor to fill out.
Permalink Reply by katiegirl on July 17, 2015 at 2:39pm
They sent it directly to my doctor just had to give her fax number. I spoke with the "xelzsource" department its called . I got the number from the same xeljanz site where you get the other copay card

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