Alopecia World
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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 Football fan on
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I am so waiting on the results of this trial.Hoping it will tell us what was used on Non responders to help kick start growth.Will help Doctors to know what to prescribe!
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Permalink Reply by Xeljanzmiracle on
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Hey fellow Xeljanzers! How many of us on this site are on Xeljanz, and where do you live? I opened a new discussion on this topic yesterday after meeting my first fellow Xeljanzer IN PERSON at Costco (a U.S. wholesale store) yesterday. It would be nice to get together with others in the San Francisco Bay Area where I live. Or perhaps some of you would also like to meet and see each other's regrowth in person. Please respond here or on other Xeljanzer discussion. Thanks!
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Sounds great! I'm using Xeljanz and would love to meet others in the CT area
I've been having great results.
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Hey Xeljanz2015, I see you incorporated Xeljanz into your name like I did, lol! I have been having great results too and am now on month 3. Would you mind replying on my discussion re Xeljanzers? It's under the Symptoms and Treatments section. If no one replies within certain period of time, it comes off the front of the Discussions page and gets buried. I'm hoping more Xeljanzers will reply, so we can find each other and get together. Also, please feel free to upload any pictures of your growth. Thanks!
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Permalink Reply by JeffreySF on
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Ive been following this discussion sporadically...Whats the consensus among users of this medication? Is it working for what % of the alopecia population?
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Hey Jeff! I don't think we would know the answer to that percentage question unless we knew FOR SURE how many alopecians around the world have taken Xeljanz, and what their individual success (or non-response) has been. I have read every single reply on here, back to the beginning. From what I have read, the majority of Xeljanzers have had regrowth sooner or later. But there are a few who have not. Who knows, they might not have the autoimmune form of alopecia. Maybe their loss is androgenetic or male or female pattern baldness, or from stress, menopause, pregnancy, or other hormonal factors, which Xeljanz does not address. But from what I have read on this blog, MOST of us are experiencing regrowth on Xeljanz with little to no side effects.By the way, I would like to.meet you.in person one day. You were the first person to welcome me to Alopcia World and we are both.in SF Bay Area. My doctor's are at UCSF. I Live in Oakland but will be going to the City for my next appointment. Will let you.know when. Maybe we can get together with your spouse if its convenient for you guys.
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Hi...I've been on xeljanz since June 5th, 2 months on 2 pills and 3 months on 3 pills. Thinking about going back down to 2 pills. Have 1/2 eyebrows, 3/4 eyelashes and longish peach fuzz on scalp. Very hopeful, but have the same ?s about maintenance as all of us. Also, as of Jan 1st, do we all have another calendar year with the xelsource copay card?
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Congrats Carol! Do you have any pictures you can upload? Yes, I believe your co-pay card will renew next year. I'm in the Hardship (low income) program and my.prescription is good to receive Xeljanz for free until next August. Did you try to apply for Hardship Program? Someone said you could make up to $65,000 a year and still qualify. Check it out.
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Thanks for the info. I was curious to hear how the medication is working for people.
Send me a message when you will be in SF. Hopefully we can meet up.
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Ok Jeff will do. I'm semi-retired so my appointments are usually in the morning. Maybe we can get together for lunch. I was looking for a good place to eat near the Derm Clinic on Divisadero and you know who has great food? The main hospital across the street, lol! What's really funny and ironic is that I used to run the DERMATOLOGY Private Practice for 5 doctors at UCSF on Parnassus in the 80's. I even assisted with hair transplants. Never in a million years did I think I would lose all my hair and become a patient 30 years later! But now, thanks to Dr. King and Xeljanz, my hair is growing back. By the way, I read your thread on tattooed eyebrows. I'm not going to do that now, since mine are growing back, but I'm thinking of getting the semi-permanent eyeliner But you went to someone in Beverly Hills right?
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Cool! What's her name?
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