Alopecia World
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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 Frrankie on
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I just moved to 11 MG a day with the extended version of Xeljanz. I was on 5 MG 4 pills a day. What do you all think. Is this better or a lower amount.
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Permalink Reply by Rascalx2 on
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I had good regrowth with xeljanz at 20 mgs, i have a dime size bald spot in back like when i first got alopecia, anyone have this and not progress ? Im on 15-20 mgs if xeljanz currently.. i jnow its so unpredictable but im thinking of getting a shot from derm to hold on
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I don't know. Have you considered DPCP for that spot. It is topical alergesic. It is a daily thing so maybe a cotisal injection may be better.
I have had AT forever but years ago I did get results from DPCP. I have been on Xeljanz for about 10 months. I am getting results but it is slow.
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Hi everyone,
I started to take Xeljanz since beginning of the year, bought from Turkey, 10mg/day.
Furthermore, I take 120mg fexofenadine and I try DCP at one spot on my head to see any differences to the rest, may be interesting. I'm totalis.
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Hi Franky!
i got mine from Turkey too, did you go yourself, mine was post but health Canada doesn't let me to get medicine by post again, :( beside is so expensive, just worried how can I continue to get more pill as we need forever!
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I started taking Xeljanz XR, it's been 1 week. When did everyone notice for those who had eyebrows falling out and beards, how long till xeljanz could regulate the hair falling out.
I understand it takes awhile before the hair comes back but I'm hoping I can keep the hair I already have and stop some of my current hair loss.
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Hello all,
I have just signed up as a member after spending months reading your posts about Xeljanz and alopecia - your words have given me a lot of comfort.I am 49, and have been AU since June 2017 - I lost everything within three weeks, with only one previous episode of alopecia in my lifetime, at age 17, when I had one small patch at the back of my head which went away after Kenalog injections. As you will all understand, the last 7 months have been horrific and devastating.
I am hoping to get on Xeljanz by the end of the month. I live in Montreal and it looks as if my doctor here will prescribe it, though I did manage to see Dr. Brett King in CT in November, who will prescribe it to me if need be. Of course money is a problem - I do not have coverage for this, though I will beg and plead my insurance company - but mostly I am terrified that Xeljanz will not work for me and then I will have run out of options. I have been applying a topical tofacitinib ointment to my brows and lash lines since December 22 (prescribed by Dr. King) but absolutely nothing to see so far, which is worrying me and making me think I will not respond to the systemic medication.
I know it's all early days - I haven't even been prescribed Xeljanz yet! - but wanted to say hi and let you know what happens on my Xeljanz journey. Not sure if there are any other Montrealers on this thread, but it looks as if I will be the first patient within the McGill University Health Centres to take Xeljanz for alopecia.
Cheers all and thanks for being out there in the ether during some of the darkest times of my life.
Anna
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Hi Anna, the exact same thing happened to me. I lost all my hair including eyebrows and eyelashes in a matter of a few weeks. It started in September of 2016, and I've tried all the homeopathic remedies and diet with little to no results. I too read posted and waited about 6 months before joining the group. I have an appointment with UCSF in February and hope to either get into a trial or get the xeljanz prescription. The struggle will be getting my insurance to pay for it since I'm on Medicare now. I'm on a ton of supplements and LDN. I tried the topical steroids and they seemed to work and then all my new growth fell out so I stopped. Good luck on your journey and keep us posted
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Hi Carlie - thanks for your reply! Let's keep in touch as we both seem to be at about the same stage of things :)
Anna
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I have just sent you a friend request. Am in montreal now
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So guys- I had an interesting xeljanz related experience. Last week I got quite sick- the docs thought it was appendicitis- needless to say it wasn't - turned out to be an intestinal infection of some sort. It appears not to be xeljanz related but it was interesting as the doctors were all clueless about xeljanz and nervous about me being on a immune suppressant. It was difficult trying to explain the context of what xeljanz is- a targeted immune modulator. So just wondering if any of you guys have had an experience of trying To explain xeljanz to doctors. Another thing I'm kind of nervous about is that I was given Iv antibiotics - I argued against it but the doctors were insistent. I'm a bit worried this may set me back in the regrowibf- has anyone had to go on antibiotics and what impact has this had on their recovery?
Currebtly progress is slow. My head is mostly covered in fuzz now with some sections thicker then other giving an impression of spottiness. Most of the fuzz is white with some bits slowly turning brown. I'm really looking forward to a stage where I can stop wearing a wig even if it looks like I have very very short hair. I am month 7. Just wondering if those of you with good results went through a stage of fuzz before getting normal hair growth. For the new starters I can say the hardest thing I have experienced with xeljanz is the being patient. Hair takes forever to grow normally....recovery from AT/AU seems to take an eternity!
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