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 cws on November 3, 2015 at 11:19am

Possibly already posted:

 Incyte has also recently initiated clinical trials of INCSHR1210, an anti-PD-1 monoclonal antibody, in patients with solid tumors, INCB53914, a selective pan-PIM kinase inhibitor, in hematological malignancies and topical ruxolitinib cream for the treatment of patients with alopecia areata.

Good news for those with AA. Could also help to expedite oral treatment for those of us with AU. 

Permalink Reply by Jckah on November 3, 2015 at 7:00pm
Today marks four months. It's growing in patchy, and my right side seems to be more resistant than my left. I think it's going to be a few more months before I have a full head of hair.
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Permalink Reply by Merry on November 3, 2015 at 7:20pm

Awesome regrowth, Jckah! Were you AU?

Permalink Reply by Jckah on November 3, 2015 at 7:59pm
Thank you! Yes I was AU. I was AA from 3-10 years old, then it all fell out and I've been AU for the past 17 years
Permalink Reply by Xeljanzmiracle on November 3, 2015 at 8:17pm
Congratulations, looks great! My right side is more resistant too. I wonder what's up with that?
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Permalink Reply by Merry on November 3, 2015 at 7:24pm

Has anyone been presribed more than 4 Xeljanz tablets per day? I am finally seeing a VERY few white hairs after about 7 months on the drug. This last month I have been on 4 tablets per day. I hope my doctor will add something else in addition or a higher dosage of Xeljanz if it is safe.

Permalink Reply by katiegirl on November 3, 2015 at 7:31pm
Mine grew in very similar. I was at a point where I swore the right side was never going to grow but it gave in. Very Happy for your growth your on your way to your pixie cut! keep us updated :)
Permalink Reply by Jckah on November 3, 2015 at 8:02pm
I'm so glad to hear that because I've been getting a bit discouraged, thank you! I am already one step closer to the pixie, I had to switch from my vacuum wig to a lace, so close!
Permalink Reply by Xeljanz2015 on November 3, 2015 at 9:31pm

Hi, I'm about to switch from the vacuum wig as well! Still have lots of patches, but it seems to be growing!

Permalink Reply by Starshine on November 4, 2015 at 10:02am
Hi Merry, ask your doctor to add Plaquenil. So glad to hear you are finally seeing something...its a start!
Permalink Reply by Football fan on November 4, 2015 at 10:47am
Hi Starshine 1 month on 3 pills a day and nothing yet don't know if they will add plaquenil.How much do you take and what time of day. That seemed to do the trick for you!
Permalink Reply by Starshine on November 4, 2015 at 11:10am
Hi Football Fan. I take the standard dose, I think it is 200 mgs twice a day. This drug is a little different in that you can take both pills at the same time, so I take them in the evening with my third Zeljanz pill. I also had a ton of cortisone shots all over my scalp which seemed to help. If that does not work, you may need to up to 4 pills, just to kick start it. Keep us posted.

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