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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 Starshine on
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Hi Summer and Tamer. I am in the same boat. Three months on Xeljanz and only tiny vellus on scalp that does not seem to be doing anything. I am on my second round, but my copay will also run out soon. I am also older, but have only been AU for less than a year.
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Seahawks Dad,
My son lost everything that quickly too ( just turned 13 on Monday). Dr King is ok with him going on Xaljenz. We were just turned down on the insurance and will try the appeal process. Trying to contemplate affording it is frightening. Welcome aboard and God Bless your family.
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Thanks Fenster,
I really appreciate that update. So many dermatologist take the conservative approach and waiting for the trials to end. Dr. King is out front on this..our challenge is flying across country for the follow up visits, etc. However we view being on Xeljanz as a short term solution to get the results we hope for...then taper off. The ultimate goal would be to have a cream and just apply to the areas in need vs. exposing the entire body with the medication. Make sure to utilize the Pfizer co-pay card.
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Sounds like our kids are on a similar path. My son Billy had his fall out happen over a pretty quick period and lost everything including eyelashes and brows. Did she lose that too? That happened when he was 11 . He is now 13. Can you tell me if there was any side affects with the Methodtrexate shots and your thoughts on it. We are with Dr King and awaiting an appeal on the Xeljanz. Good luck. I too worry that my son is too young but defer to Dr King.
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I tried to get in touch with Brett King last week to schedule an appointment but he hasn't gotten back to me yet. He must be inundated with requests for appointments. How quick did he get back to all of you when you first contacted him?
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It took a about a week or so to get a reply...I"m sure he is extremely busy but he will get back to you eventually. From the limited time I've corresponded with him...I can tell he is extremely empathetic and professional. Please keep us updated and good luck!
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Unfortunately nothing.
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I am 10 weeks into my treatment with xeljanz, and I haven't seen any hair yet, not even vellus. It does seem to be helping my fingernails which have also been effected by my AU. My doctor wanted to up my dosage to 15mg, but my insurance company refused on the basis that 10mg is the USDA approved dose for RA. They are paying for 10mg, but I don't know if that will be enough. I am excited for those who are getting such wonderful results and continue to hope that in time so will I. It's getting harder and harder to continue hoping.
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Permalink Reply by AlopeciaDestroyedMyLife on
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10 weeks is really nothing if you have had AU for along time. I'm surprised you're Dr is trying to bump on up the dosage after virtually no time at all. I would stick with it for at least 4-5 months before upping the dosage and then wait another 7-8 months minimum on 3 pills a day.
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ADML, I'm so glad that we have someone with your months of experience on here. I think that while the pictures of people's regrowth are encouraging, I compare myself to them and worry too much. I really HATE this disease!!!! Thanks for your input.
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Good point on your fingernails. I mentioned the Jakafi did not help my hair regrowth, but it did basically totally cleared up my nails.
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Hi Merry, I am at 10 weeks too. It is getting hard to keep optimistic espescially seeing the great results others are getting at this point. Did your doctor have any explanation why some of us are not responding as well? I am supposed to see mine soon and will see what he says. Unfortunately I don't think they have a clue either.
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