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 Football fan on July 31, 2015 at 1:49pm
Had a depressing week why the F am I not growing any new hair.14 weeks in and the only thing I have to show for it is some new hair on my knees and 4 pimples on my face.Its all I think about now.On other sites people just love their bald is beautiful best thing that ever happened looks.Are they for real or am I just a superficial person. I want my hair back desperately.Can not afford 3 pills a day but how about adding an extra pill maybe Monday,Wednesday and Friday do you think that will help?I am truly so happy to read and see all the success stories on this site I think that's what keeps me going.
Permalink Reply by AU1989 on July 31, 2015 at 2:09pm

Hey- you are not being superficial. It is not like male pattern baldness.  If I could have lashes, brows and maybe a beard Id be OK. If it fell out over 20 years then Id be OK. my type of AU makes me feel like I am not myself.  some of us might be growing more than you in the short term but its also true that it might not matter if it falls out when we stop xeljanz.  I will be annoyed if I don't see any growth but for now this is what we have to live with. The goods news is that they are closer to solving this than ever before

Permalink Reply by katiegirl on July 31, 2015 at 3:48pm
Football fan, you are not superficial and you have every right to be upset. I know it is very hard to up to three pills a day but ... Once I upped it my hair began to grow. My doctor is on the team at Columbia and she is convinced that I just needed to take the three pulls a day and now that I've turned off that signal she thinks by dropping down to two pills a day I'll still keep growing. I did go down to two pills a day and although its only been a week I am growing hair still. If anything changes I will let you know. Have you tried to get the xeljanz hardship card ?
Permalink Reply by Julie on July 31, 2015 at 4:42pm

Hey Katiegirl! How long were you on 3 pills a day for? I'm thinking of upping mine but will probably only be able to do it for 2 months max. Thanks:)

Permalink Reply by katiegirl on July 31, 2015 at 4:45pm
I only did it for a full four weeks. I probably would've done two months but I honestly couldn't afford it and again my doctor believes I'll be fine now on 10mg
Permalink Reply by Julie on July 31, 2015 at 5:07pm
Thanks Katie! I think I'll give that a try.
Permalink Reply by katiegirl on July 31, 2015 at 3:49pm
Oh and also I have the worst acne that I've ever had in my life! Lol. At this point I am bald and have acne but hey is my hair keeps growing I'll take the pimples !
Permalink Reply by Toks on July 31, 2015 at 1:50pm
Why turkey
Permalink Reply by singh on July 31, 2015 at 4:15pm
Anyone who is taking xeljanz have had full regrowth and are on a maintanance dose?
Permalink Reply by TM23 on August 1, 2015 at 12:23am

+1.. someone please provide your update

Permalink Reply by Merry on July 31, 2015 at 5:02pm

 I am right there with you football fan except I don't even have any hair on my knees! My doctor tried to increase my dosage to 3 pills per day, but my insurance refused. At first I felt lucky that my insurance was paying, but it's not doing any good if I can't have the dosage I need! I don't go back to my doctor until September, but I hope I can find a way to get that higher dosage. It seems like getting my life back is so close but so far away!!! I love seeing all the success stories on here though. It's time for this nightmare to end for all of us!! 

Permalink Reply by Starshine on July 31, 2015 at 5:16pm

I am in the same boat, pretty much.  Lots of vellus that does not seem to do anything and no real growth.  I think upping the dose to three times a day is the key and maybe it would act as a trigger if we could manage to take it for just a month, worth a try, even if it means paying out-of-pocket for an extra month supply.  

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