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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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Replies to This Discussion
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Permalink Reply by Delia1685 on
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@texas2016 Your situation sounds very similar to my twin sisters. I am on here researching new option for her treatment. She initially responded very well to Xelijanz but then had to go off of it because the study at Columbia ended. She is back on it now, but it isn't having the same effect. She has been on it for about 3 months, and there is no sign of regrowth. Did you ever try ruxolitinib? Or would you recommend anything else? This has been pretty devastating for her.
Also, are you getting Xelijanz prescribed by a doctor? If so, how? My sister and I have tried to fake RA, but it has been unsuccessful in landing us a Xelijanz prescription. We most recently purchased it for $1,500 for a three month supply in Turkey. Again, it recently doesn't seem to be working but since it had such a great initial effect, we are still trying. It is discouraging to hear that it never started to work for you again... :(
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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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