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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 ChrisPowers on
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You got it.
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Permalink Reply by Anna on
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Hi ChrisPowers,
So sorry to hear this; it must be awful. I too am so far among the non-responders - have been on Xeljanz 5 months at 30 mgs, and not a single vellus hair anywhere on my body - but I am seeing my doctor tomorrow and I am pretty sure we will go up to 60 mgs, with perhaps some adjuvant steroid therapy as well. Not sure - I will keep you posted. Just know that there are others out there who have not had the hoped-for success with Xeljanz, and it's really, really tough. I feel like I was already in such a tiny minority to get such a severe AU case (nails wrecked as well) and then I have had even more bad luck to be in the minority of patients for whom Xeljanz doesn't work. I am not giving up yet though....
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Hi Anna,
I hope things started to pick up for you. If not, I wouldn't get too discouraged just yet for the following reason: it sounds to me like you might be in the middle of an active flare, in which case very few, if any treatments are likely to be effective during that time.
I know that I've experienced periods lasting several months where my nails would suddenly start growing ultra thin and split all the time. For a while there, I had to wear clear nail polish (or something similar) for strengthening them because all the splitting was a nuisance (not to mention painful). I extrapolated from my nails that I must be undergoing a more severe bout of alopecia, but it was impossible for me to know otherwise, being universalis.
Anyway, my point is, flares are temporary, even if they last for months to years. Something like pulse corticosteroids (or a similarly drastic intervention) might help to at least put the flare into remission so that you might become more responsive to typical therapy like Xeljanz. If I were you, that's where I'd be directing my efforts. You'll know the flare is over once your nails start growing strong again. At that point, I wouldn't waste any time getting on a high dose of Xeljanz, and crossing your fingers.
Chris
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Wow 30 MG of Xeljanz seems like a lot. Can't imagine taking 60 MG. How can anyone afford it? I don't think insurance will cover it.
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Well, 25 mg isn't working for me, or isn't working fast enough. At this rate, I'll have eyebrows in five years, maybe eyelashes in ten, and a head of hair in two thousand.
The way I look at it now, at least this way I'll get an answer to whether it will ultimately work for me at all. If it grows back, I can experiment with reducing the dosage to something geared more toward maintenance.
I should also mention that at 5'11" and 215 lbs, I'm larger than your average Xeljanz user, in all likelihood. I also just tend to need higher dosages of medicines in general.
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For those of you who have had your doctor up your dose- did you have problems with your insurance? My daughters doctor wants to increase to 15 mg but so far insurance is denying coverage. I guess we should be happy they have covered so far but extremely frustrating that we have to go through all again for one extra pill. Anyone have any ideas as to what we should say in our final appeal to get them to change their mind??
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Hi everyone,
I posted a discussion thread for Xeljanz non-responders a few days ago but have had no responses. Am I really the only non-responder on this forum? Trying to get info in one spot to see if there are any patterns, and also perhaps share the frustration and misery. If you are a non-responder, please consider looking for the thread and sharing your story?
Thanks,
Anna
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Hey Anna, I was only on them for 8 weeks before I stopped. Got some vellus hair but can’t tell if I was a responsder or non-responder.
how long have you had alopecia for ?
Kind regards
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Hi Singh,
Thanks for your reply. I have been AU for one year, and have been on Xeljanz for 5 months, now at 30 mgs. Not even a single vellus hair!
Anna
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Hi Anna I think 30 mg is a good dose to be on. But just to say the guy who started this forum Adml was on xeljanz for 7/8 months before he seen any hair growth. Go back to the first few pages on this discussion and you will see his progress.
My dermatologist did say it takes a good 3 months to get in the blood and then usually things could kick off.
The fact that you have only had alopecia for 5 months you would think it would work a lot quicker.
maybe change your diet like no dairy or gluten for a little while and see if there the culprits that switch on your inflammation and along side that your xeljanz might work better ?
Dont give up
kind regards
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