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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 Jcortez05 on
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I'm on 2 pills a day but sometimes I just take 1 a day .. The front is a lil fine .. I had fine hair before I lost it anyway.
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Permalink Reply by Starshine on
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I Katiegirl. I am also on 3 pills a day and would like to go down to 2. I have full regrowth also. You have not noticed any change since decreasing to 2?
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That's good news from you katiegirl,how's your hair . I think you still on Vitamin D right!!
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Hair is great. Continuing to grow I am at four inches now, 100% growth over entire body. I still take a daily biotin supplement 10000mcq and make it a habit to drink vitamin c daily. My vitamin levels were never low but it can of course help.
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Keep going katiegirl 'm so glad to you,
I Completed 2 weeks now still not yet hair grow hope soon I see something
thanks
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I hope so too sultan. I sending out positive energy everyday for Everyone on here. Best of luck and keep us updated.
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New to this forum but had to join with the buzz of JAK changing the game. Ive been almost fully AU for jeesh idk 20ish years - suckkkkkkkkkkkkkks so bad. But still holding out hope...
So I saw Max's post which is amazing!!!!!!!
Can anyone tell me is Dr. King just straight up prescribing this JAK for anyone who has AU/AA/AT who makes an appt with him?
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Permalink Reply by Xeljanzmiracle on
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Where do you live gcobb? Doctors all over the U.S. are prescribing Xeljanz now. There may be someone on the forum that can refer you to the dermatologist they use. It takes months to see Dr. King.
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Hi X..miracle,
thanks for replying. I live in Philly. I used to be a patient of Cotsarelis before I just gave up with his BS...With the emergence of JAK drugs I tried to schedule to see him or his colleagues but at last phone call he was not accepting new patients.
I suppose the issue wont be getting a prescription but the issue will be getting insurance to cover the meds? Any idea of how long it will take for insurance carriers to agree that this is a effective treatment for alop. that they should be covering?
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Gcobb, since you and many others are NEW to this discussion, I'm going to give you an assignment. First of all, AFTER you read Xeljanz's potential side effects and decide you still want to try it, you can get $12,000 (4 months worth) of Xeljanz FREE thru Pfizer's co-pay card) this year. Google that and follow instructions to activate and print out the card. Second, depending on your income, Pfizer has a Hardship Program wherein you can receive Xeljanz free indefinitely! I have been on that program since last July. Its for people living in U.S. ONLY. Google Xelsource and call them to see if your income qualifies. They will mail you a 2 page enrollment form for you and your doctor to fill out. Third, go to beginning of this discussion and start reading the 3,000 replies so you can become familiar with the Xeljanz users and their progress and pictures for the last year and a half. Note: In order to get the free Xeljanz it doesn't matter what kind of insurance you have or don't have. Pfizer supplies the Xeljanz thru their own pharmacy with the Hardship Program, and with the printed out co-pay card you just take it and your PRESCRIPTION to a pharmacy to get the $12,000 worth. After you get started on one program or another then you may have to deal with an insurance company later. But first things first. Get your free Xeljanz and start regrowing your hair right away like the rest of us. Of course read the potential side effects and make sure you are willing to risk them like any other medicine you are thinking of trying. Welcome to the thread!
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By the way, I was AU for 5 years when I started Xeljanz last July. To read my background pull up my personal discussion called "From Totally Bald to Regrowth in One Month!" under Symptoms and Treatments on main page.
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thanks XMiracle for all the information!! for me it makes no sense to sign up for the copay card because once those 4 months are up I couldnt afford 3k/month and for sure would not be approved for the hardship program.
I suppose I will have to wait until it is approved for alopecia. Any idea of a time frame on that if all goes well?
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