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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 AlopeciaDestroyedMyLife on
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Hi Marisa,
Xeljanz has not been studied on children yet and there is no confirmation to tell us if it is safe for them
to use. Xeljanz is a potent and potentially dangerous medication. Taking into consideration your sons age
I would really wait for some solid results from the trials before making a decision.
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Permalink Reply by cws on
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Unfortunately, this would not be a treatment for a 3yr old. This is an extremely potent drug and dosages are for adults. I know it is difficult to see your child with this condition, but he has plenty of time ahead of him to see if it goes into remission naturally. I suggest waiting for the new 2010 science to unfold and be tested before trying any aggressive treatments for a child that young. The good news for him is that new drugs are being developed that very easily could be the treatment he needs once he is older. I have two children that have fortunately avoided this, but do worry that it could happen any day to them. I take comfort in knowing the future will have many more treatments available to them than I did. I think there will be some significant advances in the next 5-7 yrs.
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Thank you so much for you alls responses...it is very much appreciated....wish you all well...
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I was thinking of contacting Dr. King's office for an appointment. Did you have any trouble getting to see him? If you don't mind, how much are you spending on the medication?
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Dr King is pretty booked up but it is possible to get an appointment to see him.
For 60 tablets $2830 . Its not cheap but if it works it will be money well spent.
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Thanks. I sent an email but at that price, I don't know if I can afford the drug itself especially if you need to continue taking it.I guess the only hope is for insurance companies to cover it, but I am afraid that is going to be a long wait and I am so depressed right now, it is going to seem like forever. Thanks for posting your progress, at least it is hope.
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It is a very large investment but it's still worth trying to see if your insurance would cover it if not fully, partially. I would speak to Dr King about this as he is pretty skilled in dealing with insurance companies.
You may be able to pin it to something else like Kyle Rhodes for his psoriasis .
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I have not heard back from Dr. King. I wonder if he has been flooded with emails. Did you email him directly?
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Yeah, it may take a little while for him to get back to you . Which email address are you sending it to ?
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Permalink Reply by macdev on
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hello, do you think it's intresting
for alopecia aerata or just universalis?
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It should work with ALL forms of immune system alopecia .
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