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 katiegirl on April 19, 2017 at 11:20pm
Thank you football fan, not sure what will happen after I deliver though. Immune systems are typically suppressed during pregnancy so my doctor believes that has helped my alopecia (although I have heard the opposite happen to people)
Permalink Reply by Patchesforlife on April 19, 2017 at 11:48pm
I have heard some pregnant woman lose hair while being pregnant others after giving birth. Did you have spots while being pregnant?
Permalink Reply by Christopher's_mom on April 20, 2017 at 7:08am

Hi Footballl fan

I've only posted here a couple of times regarding my son's response to Xeljanz, but I do feel like I am getting to know some people through reading their stories on this thread. I thought about you at my son's last Dr appointment at Northwestern University in Chicago because I believe you haven't responded to Xeljanz.

This January, Northwestern has just begun doing a research trial using a medicine other than Xeljanz.

It's a double blind study so half the patients get a placebo, but the other half get medicine for free.

If you get enrolled in the study, there is a fair chance that you get the real deal...for free...and quite possibly... hair!

Permalink Reply by katiegirl on April 20, 2017 at 8:41am
Do you know what medicine it is?
Permalink Reply by katiegirl on April 20, 2017 at 8:43am
Patches for life, I have only had one small spot since being pregnant (I am due in the beginning of June). The spot filled back in on its own. I have also heard of some people losing hair while pregnant and others lose it after pregnancy. Will see what happens. I'm glad that I have kept my hair thus far, if I lose it after my pregnancy I will hopefully restart xeljanz.
Permalink Reply by katiegirl on April 20, 2017 at 8:47am
Just found this on northwestern page, could be promising for future alopecia treatment. Doesn't say what drug but another jak inhibitor
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Permalink Reply by Football fan on April 20, 2017 at 12:49pm
Thank you for thinking of me I would love to try something else but I live in Los Angeles and would have to find a trial closer by.Its very frustrating because I thought I was a perfect candidate for zeljanz have almost all my eyebrows and lashes and can see that soft fine facial hair in a makeup mirror and about 30 percent of my scalp hair.I know there has to be something out there that will work on me.
Permalink Reply by Frrankie on April 20, 2017 at 1:35pm
Does anyone know the percentage rate for zeljanz. I have read everything from 60% to 92%. Not sure what to make of the numbers.
Permalink Reply by Knightsfan212 on April 20, 2017 at 2:43pm

Hi everyone,

I just found this clinical trial for two new JAK inhibitors for the treatment of Alopecia Areata. I have seen previously on this forum people saying that Pfizer is just not interested in Alopecia Areata. It seems to me that these JAK Inhibitors are relatively new, and that Pfizer has finally taken an interest in treating in our patient group. Unfortunately, its not immediate, but Pfizer has a good reputation of being able to successfully move their products through approval and to the market. Also, the study is recruiting in quite a few different places.

https://clinicaltrials.gov/ct2/show/NCT02974868

Permalink Reply by Alo-mom on April 20, 2017 at 3:14pm

Knightsfan, Thank you. I agree I think Pfizer will be in the game. They are for RA, why not for AA. 

Permalink Reply by Knightsfan212 on April 20, 2017 at 5:20pm
Yes, and actually one of the JAK Inhibitors in the study they are testing is looking for an indication for both RA and AA. Hopefully its just a matter of time...
Permalink Reply by Patchesforlife on April 20, 2017 at 5:01pm
Thank you.its great news that Pfizer is onterested. How did you imply so?

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