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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 Peachfuzz on
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It states on the co pay card application that you have to be from the US or Puerto Rico, how would it be possible to get the card and meds if you were from someplace else?
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Permalink Reply by Xeljanzmiracle on
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Does it state that Peachfuzz? I guess they ignored that. And since the co-pay card is printed out from the internet and activated on the phone, they took the card and presented it to a U.S. pharmacy. I don't know the details, but there are people on this thread that have done it.
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Permalink Reply by sadele on
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Here's an update on my growth:
I have about 60% growth. The top is very thin and seems to fall out a lot. I still have to wear wigs. The hair wants to grow, but when it gets a certain length, it sheds. I have 5 eyebrow hairs on my left eye, zero on my right. There are a couple lashes, but again, they fall out and haven't filled in enough to to look like I have lashes. I'm SUPER frustrated with this disorder. SOMETHING needs to approved to help us. My quality of life is t the same and no matter how great of a day I have, there is always a reminder of something that hurts my heart. I'm tempted to go to India and get Ruxolitinib. From what I have heard, it works for those who have failed with Xeljanz. I've been on Xeljanz for 9 months now... Uggggg. - Attachments:
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good progress..i also have same ammount of hair ..i was complete bald currently taking steroid shots
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Hey Sadele
Why do you say that you are tempted to go to India and get "Ruxolitinib". Why is India a special place for that?
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Hi Sadele I know how you feel nothing is working for me and it's been 10 months.Even on 3 xeljanz and 2 plaquenil not one new hair.Ive been using the cream also for about 5 weeks.The new drug Baricitnib isn't that a jak 1 and 2 like Ruxolitnib?Hoping that will be approve soon to try. Are still on 4 xeljanz a day?
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Hi everyone
I hope everybody get well soon
and please I want ask one Questions??
what you think is best
1/( Xelijanz.tofacitinib)
or
2/ Barcitinib
I want what the deferent between that
and what the best for alopecia
I know it depends body to body
please I want answer
to sharing our experience
thanks you for all
have a good day
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Hi Football Fan,
I am on 4 Xeljanz a day, 2 plaquenil and I've been using the topical Xeljanz cream for about 2 weeks. I'm also on 5,000 mg of Biotin and Vit. D. I don't know much about Baricitinib so I won't say what it is without proper research. I've talked to Dr King and he has told me that there are three patients that failed on Xeljanz and switched over to Ruxolitinib and each now has a full head of hair. Since the beginning, this has always been my "other" option. The reason I would go to India is because of the price. If insurance doesn't cover it, it can cost you around $11,000 for a month supply. It makes me sick. I go back and see Dr King April 26 so I will discuss this with him then.
I'm so sorry to hear that you are not seeing progress.. It breaks my heart because I can understand how you must feel every morning trying to get ready for the day. But you are so strong and although you may not feel it, you inspire people who meet you. PM me if you ever want to talk. Hugs to you. Xx
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Permalink Reply by 3ebdie on
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Hey Sadele,
May I ask you why you didn't get the topical ruxolitinib from Dr.King instead as he had a patient who responded very well (full eyebrow regrowth) which was published in a paper as well not so long ago? Why is it always the topical xeljanz?
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But how and where would you get it in India? I mean "Ruxolitinib" isn't generally prescribed for AA or AU is it?
I'm sorry for asking so many questions, I just learnt last week that there were successful treatments for this disease. Thanks in advance.
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Sadele,
This form of treatment is so new that I question the people who told you to just switch to Ruxolitinib for better results. Exercise caution and find out if you should increase dosage and give it more time,or,if you decide to quit, ask a doctor if you need to do this gradually.
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