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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 Frida Rupert on
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Hi Beth,
its pretty individual. My scalp hair came back last(of course - the place I wanted it most took the longest). I have heard antidotally that hair can come back from the edges of the scalp inwards which would make the top of the scalp the last place (my hairdresser said another client had AU and it came back from the edge of the scalp inwards almost like a weird crop circle... some people seem to just have it grow back uniformly, others in patches and slowly building to full coverage. Most of my scalp came back uniformly with small spots near the front hairline requiring shots-the spots filled in very quickly once the shots happened.
I think 20 mgs is probably the highest dose you’d want to be on longish term - some people go higher no issues- and some may need higher to get the growth going and then can try to drop slowly down to a lower dose. My doc would like me to try dropping though I am a tad frightened- so I’m going to wait a bit longer before attempting that. The most important factor is blood results monitored by a doc and self acessment of how you feel I think. My side effects- acne(controlled by over the counter creams) and weight gain (slowly coming off but the first time in my life that I’ve had to work hard to lose weight)- both of these for me are totally worth it for the results.
Hope that helps a bit,
Frida
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Permalink Reply by Beth on
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YEEEES THANK YOU - I must say, this is my journey and I was/am going though this myself, which I have been fine with. I have a great support system with family and friends. The two or three blogs I have read in the past really turned me off b/c of all the negative. This one has been a breath a fresh air and positive! Thank tha lawd ;)
so thank you all very much for keeping my spirits up. I’ll definitely stay in touch
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Hi Beth!
For me sides and top are the most stubborn. It is almost 5 months already and I am really anxious. Don’t want to get steroids shots because of terrible side effects I had two years ago and also upped my dosage for three weeks and now lowered it because of viral infection and herpes . Will up the dosage to 20 mg slowly again.
here there are my pics.
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Permalink Reply by Rascalx2 on
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Hey Beth, i had same pattern of growth, sides came in then top came in last, top of my scalp has never come in as thick as it used to be, i had real thick hair before i went AU, it is thin on top now. All of a sudden you will see it start to come in more and more. Ine day i was looking in rear view mirror which just had the right light and could see so much coming in on top along with so much joy. It seems that it grows back in reverse of when i lost it. It us working for you ! It is awesome to climb out of that pit if despair!!
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Hi Rascalx2 can I ask how long have you had AU for?
And how long did it take before you started seeing regrowth with xeljanz at a certain dose?
Trying to collect as much data as possible.
Thank you.
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Singh, i developed AU in 2015 christmas time, it was all gone in 8 days. Got xeljanz in May 2016 and took 11 mgs a day for a year with no results... nothing. Increased upto 15 mgs a day with no results and was about to give up on xeljanz. Talked to MD about increasing dose for last try and went to 20 mgs a day, started getting growth and then got a shot of kenalog ( cortisone) in glute, shot helped jump start growth to a better result. Results w 20 mgs started to show up few weeks into 20 mgs a day not full scruff but it literally comes in a strand at a time at first, and you are fully aware of any hair that appears because we re so smooth and desperate. Then it comes in more and more. I was pretty hairy on legs and pits , real thick on scalp, but has never really come back thick, thin on top , almost no hair on legs, some in pits... iwas really just hoping to gain eyebrows and lashes which im so grateful came back
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i have not got shots in months, i have a bunch of dime and quarter size spots in back of head , kinda have just come to accept it a little more, i need a haircut, it is looking like a combover, i feel it looks like im trying to hide the bald spots, so aware if it since this whole experience. I think when its short it actually looks somewhat thicker, oh and dont know if I mentioned this but hair comes back pure white for me at the beginning then it gets darker but i had a goatee at fidst when it grew back because i was just so happy to hve hair, i look older in pics with it coming back compared to today, looked like an old salty bastard
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I’m not on xeljanz but my hair started to regrow on its own from March of this year. AT for 5 years. 6 months down the road I’m almost 100% regrowth. There’s nowhere on my scalp that does not have “hair”. Beard is 80% back. Felt amazing having a beard again and there’s a normal shade to my facial skin since too. My scalp hair is now made up of sides and back mostly back to the correct color and growing normal (mixed with about 25% white fine hair) and the top and front about 50/50 mixed of normal pigmented with white fine hair. This is the normal transition from AU to disease remission. This is the same as you are experiencing. I’m so over joyed to have my hair back that mostly I don’t give a damn and go out as I just got out of bed but 2 things that I discovered at this point in the process (from a mans perspective) that helps me is (1) keep the scalp hair buzzed to a number 1-2. As you have said it really makes it look thicker somehow. Also apply the likes of topik or dermatch temperory color to even out the terminal growth with the fine white hairs. Thankfully that takes me from nearly normal looking growing hair to 100% perfect looking growing hair. Best of luck with the continuation of your treatment
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That is amazing Bibby, congratulations on the natural regrowth ! Something all is alopecians will like one day to go into remission!
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Cheers mate. I’ve being applying rogaine since I saw the 1st hairs sprouting but otherwise it seems like a natural remission.
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it’s still amazing your getting natural regrowth! Do you do yoga or not eat certain foods ?
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Thank you for the information rascalx2 ! That is intresting that seems like finding the right dose can possibly mean there are no non-responders but just have to see what dose works for them! Can imagine it being a shock from hair to non so congratulations on your regrowth! I have a sister in law who has been taking xeljanz for her arthritis and it has improved it massively! I guess these work for loads of immune diseases.
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