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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 AnakinWildstar69 on
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cyclosporine is a pretty harsh immunosupressant as well as methotrexate(not as harsh). I've read of some benefits/improvements, yes. I'd stick to corticosteroids, like Kenalog injections, for the eyebrows, to be honest.
LUCK TO YOU!!!
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Permalink Reply by PJSuss on
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I am attempting to get my son in the trial but have been struggling. He is 17, we live in NY, Dr. Shapiro at NYU is the Doctor, Aetna is my insurance. I am just completing my second appeal with Aetna and expect to get rejected again.
Couple of questions:
1) Xelsource says that because this is an off label use my son can't get the 3 month trial while I am appealing with insurance. Have others had the same experience? They say that once my appeals are done then I can likely get assistance.
2) I saw some previous posts about appealing to NYS department of finance i believe. Any info on how to do that would be appreciated.
Looks like at least another 60 days of insurance hell (been 4 months already).. Hope this helps him. We are a bit nervous but he wants to give it a try before heading off to college.
Jim
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Pjsuss,
First off Dr. Shapiro is a great doctor, but I highly recommend Dr. Bordone. She did all of the heavy lifting for me and she can help you get everything you just asked for.
I'd prefer to discuss this privately. Send me a PM
Greg
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Hi everyone,
I was on 5mg of Xeljanz 2x a time for over a year, I reduced it to once a day in January. All was going well but a few weeks ago I began shedding a lot and I developed 3 new spots. I bumped my dosage back up to 5mg twice a day about a week ago.
I am really hoping this slows down the shedding ASAP, as my spots are continuing to grow and grow. Does anyone have any insight or experience with this?
Thanks..
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Hi xeljanzgirl, I don't know your answer but I want to ask you after using for how long your hair started to grow?
I'm in 11 weeks now using 5mg twice daily and not dark hair yet. Thanks!
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Hi everyone,
I'm in need of some encouragement! I get a lot of support and encouragement from Frida and Return life, but I am looking for some stories that might get me out of my current slump.
I am AU since June 2017, and have been on Xeljanz for 12 weeks now - started at 10 mg, and now on 15 mg for the last 4 weeks. I have NO RESULTS at all so far - absolutely nothing. I will go up to 20mg or maybe even 25 mg when I see my doctor next (in two weeks), but I am terrified that I am a non-responder. I need to keep my positivity up!
Question for you all: any similar stories? Anyone who only saw results 3-4-5 months in? If so, at what dosage? And if so, did you get 100% hair back in the end? I feel like most people have started to respond by 12 weeks, and I have not at all, so looking for some hope.
Thanks everyone :)
Anna
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Stay strong my dear. I was, like you, convinced I was a non- responder. Up the dose if you can and see if it helps. If not then maybe add a short stint of steriod pulsing. I think you will respond but it's so hard to wait I know. Xx
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Sharing an update... 27 year old female. Rapidly became AU 2 years ago, likely due to a serious allergic reaction/Anaphylactic shock a few months prior. Been on Xeljanz 1 year and 8 months, mostly on 20mg/day. Added Allegra recently to possibly help Xeljanz be more effective. Everything was going well until this past January when I had some set backs. I thinned out a lot on the left side of my head and the back of my head. No defined patches, though. My skin was red/irritated/felt like a sunburn, so we believe it was an allergic reaction to a hair spray or dry shampoo that caused the thinning. I have been getting cortisone shots in these areas every 4 weeks since the thinning began. Looks like I am getting some regrowth, but it is slow and I am also still shedding a lot from these areas. I still occasionally get a burning sensation despite not using any hair products with allergy-causing chemicals anymore. See below some before and afters from around February to now.
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Hey Katrina,
I am experiencing something similar - however mine is due to attempting to reduce my xeljanz dosage and my relapse has more pronounced spots. However, a few months ago, when on my original dose, I had an interesting looking spot, similar to the photos you posted. My Derm explained that this was likely due to the shedding cycle - seeing how all our hair grew in the same spot at the same time.. it is likely to shed in the same spot all at the same time. Anyway, my original spot filled in no problem. No to conquer my current relapse... ugh.
Good luck !
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Oh man- so sorry to hear it's still shedding- though new growth is great. God this disease is so horrid in how it haunts us. The places it's shedding seem to be in areas where it can be concealed but understand it still causes heaps and heaps of anxiety. I think it will pass and without too much more loss, perhaps a flare ect that needs time for xeljanz to overcome. If it continues maybe ask about a short stint of oral steriods.
Your hair around it still looks amazing. Stay strong girl, wishing you the best!
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