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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 IcarusAlopecia on
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Hi Christopher's Mom!
Not really. I mean I had like 1 or 2 hairs per day but nothing like when I was like full on shedding back in Sept. 2016.
I will def do a year end update in December.
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Hi guys,
Just touching base. Going into my third month of X. So about 8 weeks.... I think (and my immunologist thinks too) that I am responding but it is SLOW... so far white hairs are coming up in my scalp and i think my eyelashes are growing in... they are at an annoying stage where they are short and making me have itchy eyes.
Does anyone else kindof go back and forth on if they are responding or not? I don't wanna trick myself and then get depressed when it stops progressing. And it is so SLOW... did you guys find that too?
So far my hair loss stopped when I started to take the meds, then in the last few weeks I've seen some blonde hair patches coming up on my head, my down there and some short(very short) lashes coming in, my brows have some patches back (though I've micro- bladed my brows so it's kindof hard to tell...
My side effects have been acne... yucky... on my scalp and face only but geeze I never had it before so it's a learning curve. On balance acne is fine as long as my hair is coming back....Also feel a bit out of it at times (headachy, mildly dizzy) but have been diagnosed with hashimotosso it could be that. No weight gain yet- not a big deal as I've lost heaps of weight since this happened to me and am a bit too skinny.....
Eager to hear if anyone's journey was similar- as in did you wonder if you were responding at first... was it slow???? By 8 weeeks should I be expecting more then patchy white regrowth?
Anyhow thanks in advance for any advice.
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Hello, also responding the same. First thin white hairs. My thin white hairs are slowly, slowly changing to thick hair with color.My best response is on my eyebrows and face. Scalp has responded but not quality hair, but it is working.
My cholesterol is high but I always run high. I am,sure xeljanz is not helping my cholesterol. My liver tests are good a little high but fine. I am 46 had this for over 40 years so it will take longer and my not be as cosmetic as I others. Good luck, take it one day at a time. Someday's you think it is stalling others you see new growth. Keep rolling with it.
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Permalink Reply by Suzie on
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First a little background on me.....I'm 52 and had developed AA during my teen years. All I remember is my hair was so thin in the back you could see my neck. Back then all my mother did was took me to our family doctor and he had no clue what was happening. Within 1 year it all came back on it's own. Fast forward to age 26 and I developed RA after my 2nd child. In the meantime my haidresser pointed out I had a small bald spot on the back of my head in which I never worried about because it was covered and again it grew back on it's own.
Because the RA was so bad I had to take Enbrel, then Humira and the last was Orencia. I believe it was the Orencia that began my AA to happen again to me....it was 3 years ago that I lost lots of hair and bald patches were everywhere! My new hairdresser said it looked like AA. I had no clue what that was and when I googled it I had my "aha" moment. Of course that is what I must have had as a teenager. I was petrified because I was losing so much and I'm also going through menopause, so that was the last thing I needed was to be losing hair from AA and menopause.
Before I started Xejlanz I was saw a dermatologist and received steroid injections which did help some of my patches. Some of my other patches were very stubborn and did not respond to the injections.
I approached my Rheumatologist with the Xejlanz idea of having it help with both my RA and my AA. I've been on Xeljanz for 11 months and all of my patches are filled in and it has helped my RA to stay in check as well. It took so long for the white hairs to finally color. I've also realized that new hair growth is so ridiculously slow and trying to style your hair every day to try and make it like you are used to is also a challenge and can be so depressing. Don't be afraid to find a specialist to help with the transition (whether it be extensions or a topper, etc.) I went to Florida and Bobbye with Hair Therapy for Women helped me tremendously with extensions and hair color which did not damage my hair and helped me through my transition while my hair was coming in. Now I am wearing dream catchers and I'm hoping by next year to not have anything but my natural hair. Patience, patience, patience is all I can say about us Alopecians and hair growth.
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Thanks Frrankie,
It's good to know the journey of others. I have to remind myself hair takes time to grow even in non- Alopecians so it's gonna be twice or theee times that when your body is fighting it (if you are lucky enough to be a responder in the first place). I think that's my concern - this stuff is pricey and it took me quite a bit of whining to get hubby on board so I'm nervous that I might not be a responder and have no results for my husband or myself.
This whole condition is such a mind spin. Watching your hair all fall out and then desperately trying everything to get it back is so hard on the emotions and X is kindof my last role of the dice treatment wise.... I started alopecia almost a year ago - it took 6-7 months to all fall out (scalp) then in the months before I started X it progressed to my body. Oh my gosh that scared me... so I've been in a state of suspended terror for ages. (On top on this, even before this happened I had a massive phobia of hair falling out from childhood when it happened to a friend)....
So yeah as you advised trying to take it one day at a time and not get ahead of myself...
Thanks so much for replying- makes it easier to know my experience is similar to others!
Frida
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hello everyone. I just recently started X and casually vape and smoke weed here and there. Can this by any chance hinder the medicine i’m taking and make it not work or is it fine if I still smoke.
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does not make any difference.
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