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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 William on
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At last, some good news about Topical JAK inhibitors, the preliminary results are promising, here is the article:
http://www.aaaf.org.au
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Sad to say I took part in this study and experienced no response, however it may help when combined with oral jaks
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Permalink Reply by 3ebdie on
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Hey peach. But is it true that some participants in the study experienced full regrowth with topical jak as stated in the article? I almost can't believe it. Do you perhaps stay in touch with other participants in the study?
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No I didn't meet any other people on the trials. Doctor running the trial told me they had some success with the topical but not nearly as much as they hoped for. She mentioned that perhaps their delivery of the topical needs to be improved, she did say it showed potential however. Sorry I can't be more positive but we have to be brutally honest on this thread for people to make correct decisions re treatment
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When I spoke to and saw Dr King he didn't think the topical was as promising as some have suggested.
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Hey has anybody out there have a slower response to Oral Xelljanz I am almost thru month 4 at 2 5 mg tablets a day my reummatolagist can't bump up the dose because that is the FDA approved dose for RA im starting to think maybe it's going to take. Longer then I hoped I do see growth in some areas but getting frustrated about the scalp and eye area. Thanks and good luck to everybody looking for results
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Permalink Reply by sadele on
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Hi James 2me,
It took me a very long time to respond. I started July 1, 2015. Had zero response. Bumped up to 20mg per day September 1, 2015. It's been close to a year since I've been on xeljanz and I finally have most of my hair. It's pretty thin on top and I still have some small circle spots that don't have hair. The rest of the hair is getting long and think enough to cover those spots. I really only notice them when my hair is wet, you can see through to them. I have a few hairs on my left brow and nothing on my right. And my lashes are coming and going. They grow in random spots but seem very fragile and once they get long they fall out. I"m using Latisse at night for my lashes.
Hang in there. I was frustrated as well but stayed the course. I have also been getting injections for the past 5-6 months. Very little amounts here and there, but I think it helped. I'm getting them less frequent now, mainly because I want to make sure the hair stays because of the medication, not the injections.
Leg hair and arm hair are all back.
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Thanks for you're informative reply Sadele glad to hear you're coming along well I will continue to be patient there seems to be hope.
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Permalink Reply by DJ88 on
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What dosage do most people here usually start with when going on Xeljanz?
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Hi Sadele, my eyelashes are breaking before getting long enough, I saw Dr King a couple of weeks ago and we actually discussed trying Latisse on one side but I haven't started yet.
James2me hang in there and hopefully it will come soon! I got a response fast, but then it took a long time to fill in the entire scalp. I still have a few spots that can't be seen and I'm not wearing a wig anymore.
DJ88 I think everyone starts on 2 pills a day. -
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