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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 singh on
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Am sorry to hear this Katiegirl I do pray it is just a hair cycle. Mybe if you can try upping your dosage for a month mybe that will make a difference. But try your best not to stress over it as that can make it worse.
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Vjensen - would you mind posting a picture of your spot? I'm sorry to ask but I would just like to see if looks similar to what happening to me
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Permalink Reply by vjensen14 on
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Sorry it's awk for me to take a picture but it's thinning into a spot
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image.jpg, 256 KB
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Wow yea I see what you mean. That is super strange especially considering you haven't changed your dose at all. Keep us updated and I will do the same. I am thinning but more on the top not sure if it's just natural shedding. I did go down from 3 pills to 2 pills about three months ago
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We need the cream in a hurry for people to put on new spots that are forming and are resistant!
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It's starting to look like once we find what works for us we have to stay on that dosage or lose our hair.I just added plaquenil 2 times a day in addition to 3 xeljanz hope something happens soon.Has anyone not responded at all?Seems like I'm the only one.Weird considering I do have some hair and have never been completely AU.Always kept my lashes maybe the latisse helped would strongly recommend everyone to use it.
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I have had no reaction to anything. 4 months of Xeljanz 2 per day, then 2 months of 3 per day with 400 mg of Plaquenil. Now I am on Ruxolitinib 40 mg per day, been 6 weeks and NOTHING!!!
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Wow what's wrong with us!5 months 2 xeljanz a day 2 months 3 xeljanz a day.Last week added the plaquenil 2x a day.will something kick in or our we wasting our time.
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Permalink Reply by sadele on
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Here's what I've done:
Xeljanz - 2 months @ 10mg per day
3 1/2 months @ 20mg per day with monthly injections.
December 12th - adding Plaquenil @ 100mg per day and decreasing Xeljanz to 10mg per day.
As of now I have growth where the injections have been, a lot of leg hair and fuzzy, thin hair on most of my head. My scalp is still the predominant thing you see, there's not much action with my growth. I'm considering Ruxolitinib as I've heard there is success with it. I'm going to proceed with Xeljanz and plaquenil for now and re-asses in 3 months.
December 9th marked my 1 year of being AU.
I'm in a very, high stress living situation and have been for the past 3 years- so I'm not sure if that had anything to do with my response.
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Some success with topical ruxolitinib
http://news.yale.edu/2015/12/09/research-news-yale-doctors-help-bal...
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