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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 Carlie on
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Yes, but it only works on your scalp. It causes a rash and diverts the trigger away from the gfolicles to the irritation.
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So if now my Alopecia is only on my head( however all over my head) it may work for me? Could it trigger eyebrows or lashes to fall out?
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Squaric acid and/or DCPC may work....these are meant to create an allegric reaction to the applied area...the theory is that it "confuses" your immune system to stop attacking your hair follicles and to attack the allergen...I did it and for me it didn't do much...
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No, I don't believe it will trigger anything to fall out. My doctor suggested I try it but I have AU and when I asked if I would get my lashes back she said no.
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Dcpc is horrible stuff makes your head feel like you have poison ivy.You start scratching at it till your scalp bleeds plus it's the consistency of Vaseline.If you have any hair it's a big greasy mess.
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Permalink Reply by ChrisPowers on
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I tried DPCP treatment many years ago. It was a liquid and not an ointment, as mentioned in another reply. I believe I went once or twice per week for administration at the doctor's office for a period of maybe three to four months. I quit after getting no results, and having inconsistent reactions which I attribute to a revolving set of interns who applied the chemical. Why they would do such a thing with an experimental treatment like that is beyond me, but regardless, I'm reluctant to say it definitely didn't work for me since I was not satisfied with the application of it, and with just one or two treatments per week, if even one is bad or ineffective, that can really derail the results. But, yes, when it's working, your head will turn red and be irritated and itchy for a few hours to as much as a day.
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Thanks Carlie
hard to know what to try first. I’ve only been to,d to use Rogaine and betamethasone all these years. Then a few months ago I started formula 82F. Never heard of all this other stuff
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The minoxidil doesn't do anything for me. Try getting on LDN. Did the formula 82F help?
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Kathy - i am pulsing with betamethasone at the mo. Really helped the xeljanz work. Hoping to wean off the steroids in a few months though I am a bit nervous at the moment as have a cold and lost my voice. Reminds me of having glandular fever which triggered this whole mess! Hopefully being on xeljanz will prevent my new hair from falling out and this is only a run of the mill cold.... I think the anxiety around this condition is what lingers long after the hair grows back etc. every little cold, illness, new medication or symptom makes us worry about the impact on the hair...were you successful with the betamethasone?
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Hi Frida. I've been on Betamethasone daily combined with Rogaine for 5 years. I really have no idea if its helping or hurting to be honest as I've never stopped. I never knew there was anything else. But in the five years I've never gotten as bad as I was the previous 10 years but I credit that to the diet restrictions (dairy) and the supplements she has me on.
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Picture time. It's coming on quite well. Still lighter in some places then others and overall seems lighter then my hair prior (I was mid- dark brown). I have three spots in the front which I am getting injected tomorrow in a hope to spur them along. The length is a bit uneven but if it keeps growing like this I should be wig free in 3-4 months (once I have enough to style it into a normal looking short haircuts - something that disguises the different lengths etc). As with us all- I worry about relapse but am trying to stay focused on the positive - 100% eyelashes!!! Yay! I have eyebrows! My hair right now is responding!
My husband ( who probably says this to try and make me happy) thinks it's growing faster then "normal". I wouldn't go that far but it's definitely picking up speed. Hoping current cold won't lead to any set backs (I think that's just me being paranoid)... happy growing everyone.
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