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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 AlopeciaDestroyedMyLife on
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If you're alopecia is not at the "locked and ready to grow phase" It will undoubtedly take longer than 3 months. It took me about 6 months to start to grow any terminal hair other than my lashes and that was moving up to 3 pills a day.
Best of luck to all of you considering going for this. If you can fund it and are willing, just keep at it and don't be disheartened if nothing happens in that short space of time.
I have about 7 small darkish patches of hair on my head now and my the bottom and top of my beard is growing in just not the center yet .
For the first time in 10 years I am actually optimistic about getting all my hair back!!
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Permalink Reply by gowml on
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Is this "locked and ready to grow phase" something that can be identified/diagnosed? The young man in the first Yale publication started growing hair after 2 months and I can't imagine his condition was in the ready to grow phase. How’s your bloodwork? Any noticeable side effects? Hope you progress continues to be positive.
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Having a lot of vellus hair to start with is a good indication that you're hair is ready to go into anagen .
Yeah Kyle was most definitely in the "ready to grow right now" phase but if you look very closely at the first picture you will see he had lots and lots of vellus hair .
Bloodwork has been fine no abnormality. I've been ill a lot more than usual but have always recovered (touch wood) . I have to make sure I get nowhere near anyone who is sick or ill because I know I will catch it . (not so easy on an airplane)
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Hey, just a random question here, Is anyone going to the National conference in California this summer?
I'm taking my son.
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Hi, I'm in Ireland and have printed off all the information of the Yale study for my doctor. How far into the study are you now? How long will it last? Are there any developments of a product being released for the condition? I'm in my third big relapse and its lasted four years now. Within those four years small amounts of my hair have grown a bit and then fallen out each year. I'm desperate to try get my hair back, as we all are. My life has stopped again after being free for 8 years. The medication being used in the trial is not approved in Ireland as far as I know either. Can you give me any information etc. regarding the trials and progress that I can pass on to my doctor so she can see what she can do here. Thanks and the very best of luck with everything.
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I am participating in the Columbia Univerity trial, am in the third week. Would love to connect on our experience.
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@Chapstick, are you also on Xeljanz 10mg/day? Did they share the results of their preliminary trial with first dozen patients? I am wondering if those people had to stop taking the drug after 3-6 months period and what happened then.
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@James, I am taking 10mg/day for six months, then the second half of the trial is off for six months. This is Columbias first trial with Xeljanz, they are near completion with their Ruxolinitib trial. They do not share specific results but did say it showed promising results to date.
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Hi, I am new to this forum and although I do not have traditional alopecia areata (I have male pattern baldness), I can totally sympathize with all of you. I came over here from a more traditional hair loss forum because it seems like most people on there make mountains out of molehills. They have such minimal hair loss like a very slight receding hair line so it really does not affect their lives because it is not obvious to the general public at all. They try to preach about not letting hair loss affect your life, but they sound like hypocrites when they are not even close to being bald themselves.
Anyway, I posted in this section because I read such favorable things from people about Dr. Brett King, and since I live not too far from Yale University, I was thinking of seeing him myself. I get frustrated with a lot of scientists who seemingly test endlessly on mice without attempting to bring anything to the human trial stage to help hair loss sufferers. I also get frustrated with hair transplant surgeons who will never innovate in any way because they are making so much money with their hair transplants, despite the statistical fact that most people do not even want these transplants in the first place.
Dr. King seems to be the complete opposite of these aforementioned types of scientists and doctors though and that is why I would like to see him. He mentioned in an interview that he is looking to make a topical version of Xeljanz that could help people with male pattern baldness and I believe he could have great success with it. I am attaching the results of a study done all the way back in 1982 believe it or not, where a man regrew all of his hair. After suffering a bad sunburn on his head, he took the drug benoxaprofen for an unrelated condition and regrew all of his hair. Although this drug was recalled due to toxicity, I believe that a topical version of related drug, combined with some type of derm-abrasion, could regrow hair in a similar manner. Here is the article: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1498062/?page=1.
And since Dr. King seems to be a kind man who is committed to pursuing new and innovative methods to regrow hair, I thought he could be interested in a similar type of method. It seems to be along the lines of what he said he was considering attempting to try with a topical version of Xeljanz. Any feedback would be appreciated. Thanks so much.
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Permalink Reply by kimberj on
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I am in my fifth month of treatment with Xeljanz. It is showing promising results however, I have suffered some set back. Due to insurance denials, I cut dosage in half for a month to make it last longer. A week after taking a half dose, I started noticing thinning. By the end of that month, I had 5 or so nickel sized bald spots. Thankfully, my doctor was able to come through for me and I am back on my full dose. I am curious to see what the end result will be from the trials. So far my labs have been normal and I haven't experienced any noticeable side effects except for headaches.
Just wanted to note that I have experienced hair regrowth in almost all areas except my legs and nose hair. Will update next month
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