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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 kevin on
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hi frida me I have to do a irm because I have an effusion at the knees and strangely I have not done anything that can have this effusion that lasts for 3 months and it's painful, I hope I have not developed any of osteoarthritis because I read that this is part of a side effect. I had a radio and an ultrasound that did not detect anything except water in the knee 2 months ago but I still suffer so I'm going to spend a month
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Hi Kevin, sorry for late reply and about your knee. I guess there are two situations- you could have an infection, which you’d need to stop for a short time and perhaps some antibiotics - or you may have something that is more complex, - has the doctor ruled out arthritis? The one thing that came to mind when reading about your situation is gout. My father in law and brother in law have issues with gout and it sounds similar, water around the joint and quite painful. Let me know how you go. If you do stop Tofacitinib it’s would only have to be until your conditionimproves and than you can restart.
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Permalink Reply by Rascalx2 on
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I decreased dose for xeljanz from 20 mgs to 15 mgs because of the concern few months ago due to risk of pulmonary embolism, i went down slow and have not had any adverse effects, no shedding, no changes, actually feel better , i would love to decrease more. I didnt grow anything until i was taking 20 mgs a day . Seems that once it grows back it is a little more stable. The problem is ; if you decrease dose you may not see any negative results, shedding , loss for few weeks, it wont fall out right away. I dont know if any if us know how long you can go w/out taking xeljanz until it is gone again.
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Hello everyone . I’m new to this blog. I live in the uk and I have severe alopecia areata since 4 months ago and I believe it’s developing to totalis and possibly AU in the future . I have heated a lot of Jak inhibitors and been following this thread for a while. Any one in the uk that can tell me of a dermatologist in the Uk that can prescribe xelijanz or at least monitor me if I start taking it ? Many thanks
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Hello.
I live in Glasgow and have been unable to find a GP / dermatologist who can help. Where in the U.K. are you ?
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Magmck. Thanks for your reply. I live in oxford . How long have you had yours for and how are you going to proceed ?
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Hi guys. Where is the best cheapest place on the internet to buy xelijanz without a prescription and how much does That cost please?
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Hi. Mines is fairly long-standing unfortunately. I’m not sure how to proceed as I don’t want to take the drug without medical supervision or at least without having my blood monitored. I have asked a dermatologist I attended some time ago to support me previously and she refused. Ive since got back to her but I’m not confident she will agree to monitor my blood. I intend to return to my GP who was also very reluctant to monitor blood work. The only options I have are to see if there is a dermatologist in the U.K. who would take me on privately either by me self referring or asking my gp to refer me...... or trying to find somewhere who can check blood Results. - so maybe some options for you to think about ..... i also believe that Pfizer maybe undertaking a number of clinical trials in the U.K. before the end of the year so who knows bur that could’ve an option for us living living here. I would suggest you have the shingles look into having the shingles vaccination if you’re seriously considering taking the drug also. Good luck. Let me know how you get on :-)
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Tthanks magmck for the input. I’m dead serious about taking the drug and I’m working on finding a way to get a dermatologist to monitor and administer Jaks and also a cheaper way to get the meds . Obviously this blog is a wealth of info and lovely people to resort to like yourself so I’m feeling fully equipped . To be honest trying anything at this point is better than living with this terrible condition :(
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There’s a closed fb group you can join called alopecia and xeljanz when you start taking it.
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Permalink Reply by DJ88 on
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Has it changed at all? What is the average for when people see full regrowth? like how long?
Also on what dosage and whats a good dosage to start at?
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