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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 macdev on
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When you talk about 300 mf of prednisone every month you mean : 300 mg on the same day by mouth ?
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Permalink Reply by Life_sucks_with_alopecia on
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Yes it is 300mg in one hit via tablets. Dr, King did say it will help the progress if taking Xeljanz with an increased dosage of 15mg a day.
I'm still trying to source a pharmacy that can offer a cheaper price than most pharmacies.
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Permalink Reply by AlopeciaDestroyedMyLife on
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Hi football fan,
What dosage are you on? 12 weeks is still a very short time.
Are you 100% sure you are still losing hairs?
Are new patches developing?
How long have you had alopecia for?
It is normal for hairs to shed . The average human head loses between 50/100 hairs a day.
Try standing under a very bright light and searching for very thin white vellus hairs .
As you have only been on Xeljanz for just 12 weeks I would stick with what are you doing now.
Don't lose hope , it will work just give it time .
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Had Alopecia 5 years.It took a year for most of it to fall out then went a year of trying every treatment under the sun dncb was the worst horrible.Gave up and got a permanent wig (take in off once a month and put it back on) after 3 months of not stressing my hair started coming back in slowly for the next 2 years till last year it was about 70 percent and started falling out again slowly. Started xeljanz in April have all my eyelashes nose hairs and 50 percent eyebrows.Had about 30 percent of my hair in April now down to 20 didn't lose any other hair.I do have a super strong immune system never get sick and I was in the falling out cycle.My Doctor says try 3 more months then quite ( I'm her only patient on xeljanz)) I don't want to give up if it's just a matter of time. I take 2 pills a day and can't afford taking a higher dosage. If it's a matter of time I will stick with it I want my hair back desperately!Thank you for your response I think your more of an expert on Zeljanz than my endocrinologist!Almost forgot my Alopecia started 3 years after developing a thyroid problem and a stressful situation.Thanks for any help.
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It can takle a while for your body to adjust to taking Xeljanz (it may take months). You have been affected by alopecia for 5 years that's a long time . 12 weeks to correct 5 years worth would be a tall order. I've had alopecia for over a decade and only started sprouting thick terminal hairs on my 7th month.
Once your body adjusts to the medication then it is really a case of just waiting it out. I know it sucks , some have regrown everything in 3 weeks or so . I've been taking Xeljanz for an entire year and still do not have full regrowth yet.
hope this helps my friend
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Same here Football Fan, about 13 weeks, not a single hair to speak of. I have lost 100% of my body hair, been AU for about a year. Derm wants to discontinue use of Xeljanz, but I want to continue, at least through 6 months.
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Hi Summer and Football Fan: Don't give up yet. I am also very slow in responding, BUT at four and a half months, I am finally seeing tiny vellus on my arms, eyebrows and teeny tiny lashes. It is all very thin and fine and very hard to see unless you stand in bright light. My scalp also has a little more vellus, which does not seem to be doing anything, but it is there. I don't know why some of us are so slow to respond, but give it at least six months. Some others who are treating with Dr. King seem to be adding Prednisone. Might be worth asking your doctor about. I do understand it is difficult and disheartening to keep spending so much money without seeing any results and it is frustrating that those of us who may need a lot more time, may not be able to get it due to cost.
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Fantastic new Starshine!
This is exactly how the growing process will start.
As time goes by it will get darker, thicker and more and more numerous
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Thanks ADML, you kept me going. I just hope it does not take too long, since I had such a slow start, but it is exciting to see some sign of growth.
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Permalink Reply by sadele on
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Has anyone considered Candida Albicans as a cause of hair loss? I know it won't be for all, but I'm beginning to do some research on overgrowth of candida in the body and how it's related to alopecia. Considering doing a test and a possible candida cleanse, but I don't want to waste my time if it's been tried before.
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I had a food sensitivity test done earlier this year that showed candida growth. I spoke with my doctor about going on a diet to reduce the levels in my system but I could not find any evidence that there would be any positive effects. The diet is super restrictive and requires a long time to see any results of lower candida. A long dose (30 days+) of antibiotics could work according to my doctor. However, that was not something I was interested in. In my opinion having a food sensitivity test done and removing the top two or three things may be an easier place to start. I don't think you will be wasting your time either way. Focusing on your diet can tell you a lot about your body and how it responds to different amounts or the absense of foods. I recently did the Whole 30 program and learned more than I thought I would from the experience. I highly recommend doing it as a starting point.
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Permalink Reply by Jckah on
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Has anyone tried half the daily amount? 1 pill a day and had success? I'm pretty little, 4'11 100 pounds and was thinking it may work for me. I take a lesser amount of prednisone because the one time my dr. tried giving me the 10 pills a month, my body responded like it was an overdose and I ended up in the ER. I got my prescription and I'm just waiting on my pharmacy to get it (they are making it very difficult of course), should be starting it this week.
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