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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 lusha22 on
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Hi! So my appeal got denied saying, I haven't tried humira or enbrel. It also says that there is only one proven case that xeljanz worked for alopecia and although there are clinical trials being completed, they don't have the data on them. I'm so bummed:( for the first time in over 12 years my hair is growing!! Any other suggestions what to write? My doctor wrote an
Awesome letter! As we wrote a personal one too. We are appealing again!!
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Permalink Reply by 3ebdie on
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Hey Aimee,
Actually you are not the first one with success:
http://archderm.jamanetwork.com/article.aspx?articleid=1913664
I have read the full article and apparently some of us might be genetic predisposed to be successfully treated with anti-alpha biologicals.
More on this case here:
http://www.belgraviacentre.com/blog/treating-alopecia-universalis-w...
So if I stand corrected you just got 4 shots of 40mg of Humira and already growing hair? So basically you are 2 months on it as you need a shot every other week? Please keep us posted on this as this could be quite interesting for all of us!
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Permalink Reply by Catharine on
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It's interesting that you got regrowth on Humira. I took it for 8 years for RA and while it helped that it did jack for my hair. It wasn't until I had to use Prednisone for a flare up that I saw some vellus regrowth on my head.
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Just wanted to share my growth picture. Since upping my dose to 15mg I have literally grown back almost the entire back and left side of my head. I have taken xeljanz for 2 months now.
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Awesome!! How long were you on 10 and how long have you been on15? Did you just get the growth after upping it to 15?
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I was on 10 for 4 weeks. I know we probably jumped too fast but she upped me to 15 after that so I have been on 15mg for four weeks. I was still actively losing hair on the 10 dose but that has stopped. I was AT prior to starting but my doctor said I would have probably progressed to AU. No side effects to date and all blood work good.
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hello it's been over 1 year dr king xeljanz Brett and Angela Crisitiano ruxolitinib that clinical trials must be finished talking about why not? why these drugs are so expensive? a response from you thank you for those who have met Dr. Brett king should know? help us and I am French ruxolitinib is approved in France and all of them for money as it prescribes xeljanz but they charge! anyone know if the alopecia reduced dose does not come back and we can take it for a long period of our life until we will know it is safer new treatment.
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I was actually just at my doctor this nornjng . unfortunately the cost comes from phizer itself. Someone with RA would pay the same cost if not covered . my doctor thinks it may be another year or much longer until approved for alopecia. And even than most insurance companies consider alopecia cosmetic
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Permalink Reply by Jckah on
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My regrowth after 10mg a day for 7 days. This is the most growth I've had in 17 years. My head is also fuzzy all over (except the sides) but it's hard to show without a light behind me. The only side effects I'm noticing is that I'm more lethargic than usual and some brain fog...I started the wash without putting the laundry in and didn't realize until I came back an hour later....my family thought it was pretty funny because I'm usually very alert and am the first to call anyone out on messing anything up, so I kinda deserve being laughed at :p haha
I'll update again next week! ^_^ - Attachments:
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