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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 kev on
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Hi guisep, I was not aware of any trials going on in Europe with topical xeljanz,in what countries are they taking place.
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but are we really sure topical xeljanz exists?. i thought because of the size of the molecule and its non water solubility feature, it couldnt be turned into a cream. Only ruxolitinib and barocitinib were the ones that could. So many people have talked about xeljanz cream that I am not sure anymore. Moreover all the news regarding topical forms of these jak inhibitors talk only about ruxoli or barocitinib
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Permalink Reply by Xeljanzmiracle on
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Topical Xeljanz was used to treat the 17 year old girl whose hair and eyebriws grew back. That was in Yale News in October.
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http://news.yale.edu/2015/12/09/research-news-yale-doctors-help-bal... do you mean this one? because in the four paragraph it says
" The drug, ruxolitinib, belongs to a class of medications called JAK inhibitors, which alter the immune system. King had previously used another oral JAK inhibitor, tofacitinib, to restore hair to a male patient with alopecia universalis in 2014, and other researchers have shown that oral ruxolitinib restores hair in this condition, too."
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That would be outrageously expensive.Like $30,000. A tube!I hope something happens soon to make the pills and creams affordable for everyone or at least have insurance cover it.My insurance won't cover the drug even for RA.If it doesn't start working after the co-pay card is used up for this year I will have to give up and wait for something else.Especially now that we will not be on that one pill every other day dream we all had,once we grew our hair out.
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I think an extra $0 was put in the reply by mistake. Maybe he meant $3,000 a tube? Anyway folks, I don't think ANY JAK CREAMS are on the market yet for general public purchase. Dr. King compounded Ruxolitinib for that girl's particular case. But he switched her to oral pills for the rest of her hair regrowth. (I.e. what about eyelashes?) ADML is in the process of having some Xeljanz PERSONALLY compounded and we eagerly await his info re ingredients, percentages, PRICE etc.
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I deleted my message when I realized I was wrong, but it was too late, lol! It was RUXOLITINIB that was in the cream form and it was published in December.
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The pill form costs that much
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Hope they are trying to make topical Baricitinib because apparently it is a whole lot cheaper.
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ruxolitinib is approved in europe and costs around 1500 euro/56 pills of 5mg, 3000 euros for the 20 mg version, so the cream might cost a lot less here. are the pharmaceuticals just trying to get advantage of so many people in the us using private insurance companies ? in stark contrast with europe where generally almost everyone uses the public health system to cover their medications?
ps. Xeljanz miracle,we can delete our messages, but i think is good to leave them for the rest of the people here that thought it was xeljanz, there were a few of them i think
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