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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 AnakinWildstar69 on
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peppermint, marshmallows, and green tea..they sooth the stomach =P
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Permalink Reply by singh on
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Hi has anyone ever tried ciclosplorine or methotrexate and had any luck with it or side affects ?
I have messaged a few people via inbox but had no reply so thought I’d try this approach.
Thank you
Kind regards.
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Methotrexate is often used in autoimmune diseases.
For severe cases of Alopecia I believe methotrexate has very little responder rate.
On the other hand the sides are pretty common.
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It's my understanding that you can't take ciclosplorine for long periods of time. I think you would be chasing a short-term fix if it worked. If you have AA, then trying this might help reset your immune system. However, sustainable results for AU has low probability from what I have read.
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Thank return to life and cws, yeh I mean it will just be a bridge until the likes of xeljanz or ctp-543 or some thing viable comes out or approved here in the uk.
what is the major difference between cyclosporine and xeljanz as they both immune suppressors?
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Hi CWS, what dose are you on now? Have you been able to decrease at all?
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I am at the 10mg per day still. I tried 5mg per day for 6 months but started seeing some loss (only saw loss on my head). I will probably toggle between these 2 doses. I have some resistant spots on my head that never got growth so I shave it still. I do have all my facial hair. My legs are only about 40%. The facial is really the most important to me right now...but I am at a point where I would be ok without it.
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Hi there - I tried both, with no results at all (I am AU). The side effects were pretty bad for me - extreme exhaustion.
I am now on Xeljanz - no results so far (I am 2.5 months in). The difference between Xeljanz and methotrexate and cyclosprine is that the latter two are general immune suppressors, while Xeljanz targets a specific immune pathway which seems to be more effective in treating alopecia.
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Thanks Anna ! How long was you ok them for ? And thank you for clearing that up for me
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I was on methotrexate and cyclosporine for 3 months. We decided to discontinue because I had no results and the side effects were so bad, and I wanted to get onto Xeljanz. Part of the reason I went on them in the first place was to show my insurance company that I had tried everything before starting Xeljanz in the hope that would make them more likely to cover me. My doctor never really thoguht they would help me as I have such a severe case.
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Well keep in mind the CTP-543 trials are in the works. Its the first time my dr ever sounded optimistic!
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I did cyclosporine for about 6 mos after going AT the first time, after a slow loss over the course of a year and after trying many bursts of prednisone and shots.
The first time, cyclosporine worked really fast and well for me - had total regrowth over the course of that time at let it grow.
After about 1.5-2 year of no loss, my alopecia came back. Starting with ophiasis pattern like the first time it probably started that way - it's not a classic ophiasis but does start on part of my neck. Just finished a 5 month course of cyclosporine and have not had the same results. Did have some results, just not the same, even doing 1 burst of predisone and many shots this time. Cyclosporine is not for long term use even though I was on a low dose, I had my blood checked monthly. I got some more severe headaches and nausea around PMS each month. Other than that, I gained some weight, not sure if that was due to stress, again, or medication this time.
I am considering trying methotrexate soon as my spots are growing and new ones are reappearing. I am close to 50% loss now I would say, even though a lot has grown back, other parts continue to lose so it is like a game of whac-a-mole.
The studies I have read show some success on mexotrethate, and it is safer for long term use, but does have stomach-related side effects for some. I figure it is worth a try.
I would like to try Xeljanz but am not sure if I want to start paying for it - make too much to get any kind of assistance other than the copay card.
I have also been doing minoxidil almost the entire time.
The first time with cyclosporine I also did minoxidil once a day, and essential oils once a day. That seems crazy but there has been some success. I am wondering now if I should restart the oils as well. This is the study about aromatherapy aka oils treatment - https://www.ncbi.nlm.nih.gov/pubmed/9828867
Edited to add a few thins and: I also tried 2 mos of tofacitinib topical cream made by specialized pharmacy in Philadelphia around the outset of this bout of AT. It did nothing, as far as I could tell.
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