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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
Replies to This Discussion
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Permalink Reply by Newjack on
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That's awesome shad . I'm reaching out directly to Beacon, hoping to hear back soon. It's the weekend so I don't think I'll hear till Monday or Wednesday .
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Here is what I’m working with right now. 3 huge spots and maybe 2-4 smaller ones. The one behind my ear has some regrowth. I noticed a nickel sized patch behind my ear in July. Got shots and then In September 4 more appeared. The one on the top of my head stayed around a quarter sized until 3 weeks ago when it went crazy. Now close to size of my fist!!! I started Xeljanz almost 2 weeks ago. I am posting the pictures to hopefully remember this time and if I respond to give hope to others when I post again several months from now. I know it’s going to get worse before it gets better. When I run my fingers through my hair they just fall out in large chunks.
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Hi all, it's been a few months since I wrote. I am on Xeljanz now since April 2017 and on 20mg since July 2017.
Attached you can see on the image the latest status of my scalp. In this zip file aw_dec_18_slides.zip, I included all the timeline photos where you can see my progress over these months.
A few patches here and there have opened up over the last few months which after talking with Dr.King, they could be expected.
I am having injections on them periodically (every 6 weeks or so). Some of them respond faster, some not.
I am on 20mg of Xeljanz and a month ago I started talking 5mg of oral Minoxidil (available only in US) which could help on the small patches.
FYI, I also visited the Rebul Pharmacy in Istanbul in December and they had stock. The price is 2280 turkish liras.
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Looking great Mastros! Once the hair gets a cm or two longer none of the tiny spots will be able to be seen! Your facial hair is well and truely back as well! I’ve got everything crossed that 2019 will be a great year of growth and that soon another option will become available for nonresponders!.
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thanks Frida :-) I m cutting my hair short every couple of weeks in order to be checking for the progress of the spots.
Over the last 6 months, I have turned a point slowly to not caring about them too much about being seen etc.
That being said though when alopecia is not on its more intense status.
I wish all the medication becomes easily accessible and affordable to all the people.
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100%!,, those spots I would just say they are war scars and will be even more interesting LOL
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Hey all I haven't posted in a bit .
I've had amazing progress. Iwas on 16mg (11mg xr + 5mg) till about 6 weeks ago .
I noticed about 4 spots today. 2 of the spots have been around before I lowered my dose 5mg .
My question is, for those of you lowering your dose have you dealt with something similar? Did you wait it out for it to correct it self?
Ovbiymy worry is that it will get worse and I will have a baseball size patch on the side of my head again...
My doctor injected only one of them (the one on the back of my head) thinking the rest were flukes and did pull tests and they were all negative. I am going to head back in a few weeks asking to increase the dose and for injections as well.
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to my understanding lowering should be happening gradually. you don't remove 5mg all of a sudden, but little by little e.g. 1 day per week you take 5mg less for start. If you see no negative results for 3 months, then you go on to reduce more.
that being said, patches are also "expected" since the medication can do only so much. it's scary when they start to come back, yet since they told me "it's expected" and I have seen them open and close, I am a bit more chill about them.
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