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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 Patchesforlife on
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thank you so much Frida. Thank you. And Kathy there is doctor called Stefan Vanderwell that works on alopecia with xeljqnz
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Kathy, Squaric Acid works similarly to DCPC. It causes irritation much like poison ivy which draws the immune system away from the hair follicle. I was on it at one point. It didnt work for me, but it does for some people. Good luck! I hope you find something that works for you.
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thanks, any chance it causes other problems? Like eyebrows? I haven't had trouble with that yet!
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Kathy, I was on Squaric Acid treatment at first. It resulted in patchy results for first couple of months but suddenly all fell out. Not to mention highly irritating and pealing of scalp. After that, I got on Xeljanz with much better success. If you can, I would skip the squaric acid as it is not a long term solution.
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Frida - any particular dietary modifications that you feel might enhance growth?
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Personally I tried a pretty intense diet at the onset of alopecia- no diary, low carbs, no gluten/grains and paleo. It didn't seem to make a massive difference with the hair but I think I felt better for it. I think some people do have success with paleo/keto and even some with a vegan diet- but it's hard to tell how much it helps and how much of it is natural remission. I struggled with diet mainly because I have a husband and kids who are fussy about food (my kids live on bread, milk etc) so that meant I had to handle the foods I couldn't have. I still try to have a diet which is low carb, low diary and low gluten - I think this helps reduce overall inflammation. My biggest issue with diet is that every specialist seems to contradict each other- eat nuts- nuts cause inflammation- eat soy- no soy, diary good, diary is the devil etc etc. in the end I was getting so nervous about what I ate I got a bit scared of food.
That said I think diet plays a role in making sure regrowth is optimal. For example I have a extremely low ferritin and iron level- so I take supplements and try and eat iron rich foods so that my regrowth is healthy. I also take a biotin, vitamin d and primrose oil supplement because these will hopefully maximise the regrowth that xeljanz is responsible for. I take a b vitamin and zinc supplement too. I'm not sure if it makes a difference but I want to try and give my body the best chance especially since i am taking steriods (and an immune suppressant- xeljanz) that may be working my organs a bit more then a normal persons....
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Cool...
I also did these dosage. Now just a quick tip. At 60mg if u experience bad acne I suggest tactu pump.
Good luck
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You are welcome Merry. 60mg made lots of progress for me. Am.one of the only alopecian in the world to have tried xeljanz and ruxolitinib ...
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What were your experiences with both drugs?Isnt 60mg 6 bottles of xeljanz a month.How do you get that much xeljanz to be able to take it over a long period of time.So far I haven't found any combination of xeljanz that works for me.Hoping a jak 1 and 2 is the answer.
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