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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 cws on
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I have been on this for 2 years now...no relapse for me. On occasion I will get a bald spot in my beard. I have a couple resistant areas on my head that seem to have a little bit of growth over the last few months...but it is very little. I am now taking 2 pills one day and 1 pill the next. I want to see what happens if I reduce the meds.
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Permalink Reply by Rascalx2 on
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Been on xeljanz since july 2016. Had nothing until I went up to 20 mgs a day after taking 10 mgs a day for months. I now take 15mg everyother day taking 20 mg the alternating days. Since December I have started growing peach fuzz all over sides of head, side burns, very fine eyebrows, even euelashes... can only see them under strong light. I am AU... Its exciting, but Have to be honest in Im trying to accept alopecia because this whole medication is a maybe.,, but am remaining positive . Anybody have input when white/blond peach fuzz thrns darker?
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Permalink Reply by Xeljanzmiracle on
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Rascalx2, My blond peach fuzz started turning darker within a month. Some people have white blondish hair longer. Congratulations on ur regrowth! Many need a higher doseage to have results.
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cws, it is good to hear from you. I have also been on for 2 years now with no relapse. Full regrowth. I would also like to reduce the dose. Have you heard of anyone having success with this? I know we can't stop completely, but there has to be a way to maintain the hair on a lower dose. Also, any word from ADML?
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Hi Starshine, I have not heard of any. I think it is trial and error and probably different for each of us. That is great you had full regrowth. It may be that you could easily get to the dosage I am trying and retain your hair. I don't think any of us will be able to go less than half the dosage. At least not with Xeljanz. Others are coming out and may possibly perform better. With you included, there are probably only a few of us that have been on these meds past 2 yrs. Still very early in the learning curve of figuring out a maintenance dosage.
I have not spoke to ADML for quite a while...I hope he is doing well.
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hi cws, you took Xejanz for 2 years and is there any side effect happened? what do you think about the maintenance dosage? you mean take it life-long?
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No side effects thus far. I get my blood check every 6 months now. This will be life-long for most I imagine. It is not a cure. As for maintenance dosage I am trying the 2 pills one day and 1 pill the next approach to see if all can be maintained. If all goes well I may go to half and see what happens. I don't think anyone will be able to do less than that.
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i have Turkey if do you wants...i can send free..i do not want money for them.
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Has anyone noticed lots of bald spots after being on Xeljanz for a while? My daughter had good regrowth but is now getting large bald spots and feels like it is falling out at a steady pace. She has just started taking 4 pills a day and was on 3 pills a day. I am fearful that it has just stopped working - has anyone else had the Xeljanz just stop working? I hope that the bald spots will fill in but we will see...
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it is not uncommon that a biologic stops working. usually what people do is switching to another biologic. unfortunately with alopecia there is not a lot of choice... for the moment
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