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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 Lori on
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So happy for you! I'm in the slow club too. I'm hoping we get some news soon. Congrats
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Hi Everyone, thank you to all of you for sharing your experiences!
All the input has been terribly helpful to me while working with my doctor, and of course has helped me to keep my chin up!
I'be been AU for almost six years, and prior to that was AA for 25 years.
I started Xeljanz on July 2nd. My growth has also been slow, but really seems to be picking up now.
I am a natural blonde and my hair is growing in VERY blonde (maybe it's white at this point, LOL!)
So, it's easiest to see in the dark with light shining behind it. Which will explain why my picture looks a bit like the surface of the moon!
So, here you go! - Attachments:
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image.jpg, 1.2 MB
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That's amazing HS! So happy for you! Coming in well !! Have you been on anything else along side xeljanz? Or even before starting Xeljanz?
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Hi - I am only taking Xeljanz right now.
In the past, I have tried DNCB (no results AT ALL), Squaric Acid (no results) and then I tried Cyclosporine and Prednisone at the same time. My hair, eyebrows, eyelashes, etc. grew back with that treatment. However, 7 months into the treatment, it all fell out, so I stopped. While on that last treatment, I also had kenalog injections in my eyebrows and on my lash lines, top and bottom.
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Hi all,
I have been a bit busy and haven't checked in on the website in several weeks, but the growth from everyone is amazing! I just saw Dr. King last week for my 3 month checkup and wanted to give an update.
I have been surviving so far using the Phizer copay card, but that has just run out. Phizer received my application for the hardship assistance and I am supposed to hear back by tomorrow whether I will be accepted (I fit the qualifications and have heard of success from others). I was also denied by insurance, but Dr. King had me file an appeal with through the Massachusetts government patient protection appeals office and will hear back in 30 days if the independent arbitrator sided with me or the insurance company. Dr. King says he has seen both.
I also asked Dr. King when he would be posting his first round of findings regarding Xeljanz and Alopecia and he was hopeful it would come by late September / early October.
I have had AU since 2008 without a single hair on my body. I just took my last Xeljanz pill last night, along with my third round of Prednisone. I have been taking 2 pills a day of Xeljanz since starting. I am really hoping insurance or Phizer comes through or else I cannot afford the medicine (23 years old in Boston is tough enough...).
I am happy to show a couple of pictures of myself to show that the medicine is working! It has been coming in more on the top of my head, but the sides and back have started growing in the last couple weeks. Let me know if anyone has questions!
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Bauer, yay!!! how exciting for you!!! Congratulations!!!! And thank you for the update about dr. king's results. I can't wait to read them!
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Permalink Reply by sadele on
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That's amazing, I'm very happy for you!
How were you taking the prednisone with Xeljanz? Daily? Monthly? Did you start the prednisone the same time as Xeljanz? I'm inquiring about adding it as well. Any information is appreciated!
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Thanks! I was taking the medicine monthly and just took my third dosage along with my final Xeljanz pill last night. The dosage was 6 pills of 50mg. Prednisone can definitely be a scary thing, but I decided to go with it. I've unfortunately taking prednisone numerous times throughout my life (for alopecia and for poison ivy at least a dozen times...wasn't the smartest child). Dr. King wanted to keep me on the 2 pills a day for Xeljanz without upping the dosage and running out quicker and he felt the prednisone would help. Since I am a little bit larger (6'4" 225lbs) than a lot of his patients he wasn't quite as potentially worried with someone who may be a lot smaller and had never taken the drug before.
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Hi Bauer sure hope xeljanz gets approved soon so everyone can takeitTry the hardship card.Did you take the 6 pills in one day every month or over 3 months.
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