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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 Newjack on
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I tried using Minoxidil drops and couldnt stand how it would make my hair greasy. Frida, have you (or anyone for that matter) tried the tablet form?
I think my hair is thinning out just because I am a guy and in my early 30's and not autoimmune related, I can live with that though!
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Permalink Reply by Sad_Rapunzel on
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No, I don't have AU. But it was stated only by Dr. Bordone.
Dr.Bruder still asking me to make a biopsy.
I've been seen only by UA dermatologists, which are very new to this field - it's far behind in ukraine then in al other world.
this is why it's a problem for me - i don't know what is it and what are my options with treatment.
yes, i'd prefer tofacitinib, because i see actual results on people here,real people. and i understand how it works. with minoxidil it's still a mystery, and still doctors not sure what to expect for every individual case.
and also it's hurtful for me. i've known about this options for 1,5 year, and i thought it's last scenario for me. i though i'll find some doctor who will be confident about diagnose and confident about treatment.
All I've heard so far either "weeell.. it could be both.. we need to mae biopsy", either "i could not prescribe you anything because your cholesterol too high and it will kill you. sorry". she didn't even suggest minoxidil until i'll bring it up while crying in the telephone. and she was like:"well.. it's only option for you now, because your cholesterol too high, we couldn't do anything, it will kill you" -_-
And you are right. I could not leave with it. I could not wait another 3 months with hope to see at least baby hairs from minoxidil. I know my luck, Frida! I will loose more hair, I will loose new baby hairs from front-line and I will not have any regrowth, only because it's me! I'm unlucky in every aspect of my life. and it's getting worse with every week.
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SR, the problem with that is the results you see people on here getting is for those who clearly have AA, AT or AU. These are autoimmune diseases which is why tobacitinib works. If you're being told you don't have an autoimmune alopecia then tobacitinib won't even work for you. You would just end up spending more money and then you'll be here again 3 months later saying it's not working and you don't know what to do. You'll be wasting money and harming your body for no reason.
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New Jack - I shopped around a bit for my minoxidil. Some are super greasy and others less so. I use one at the moment that has saylic acid in it (which is used in acne meds) as it doesn’t give me pimple like some do. I found applying once a day on wet hair was the best method for me as it seemed to feel a lot less greasy and dispersed better over the scalp. It’s really a personal thing... some say the foam is better but I found that once I had hair it was difficult to get it even.
SR- I know this is horrible for you, I just don’t want you to be all your eggs in the tofa basket if you don’t have autoimmune alopecia... The only way you will know for sure is a biopsy which You’re frightened of. How you have described your hair loss here does not seem to be typical of autoimmune hairloss though saying that diffuse and incognito Alopecia Areata happen and are autoimmune related. These can only really be diagnosed by trial and error (ie treatment to see what works) and a biopsy. In addition even if you go on Tofacitinib it takes a bit of time to work...3 months is a quick response - for vellus hairs. Some (including me) see no result for 4 to 5 months (to just vellus hairs).
I am worried about how you view yourself as an unlucky person, and I imagine this view is making this journey harder for you. You are an articulate, attractive girl who has her life ahead of her, definitely you are going through tough times now, but this doesn’t mean that this will define you forever.
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SR, why wouldn't you try taking Tofacitinib and see if it works for you? Trial and error is the main method with hair loss.
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I already left few pictures here, you must missed that message.
see enclosed
SO! both doctors called me last week. assistant of dr bordone and dr bruder himself.
aaaaand... they prescribed me a treatment i already known about this entire time!!! spirinolactone from bordone and prp +minoxidil oral from bruder.
so, i can be a dermatologist now. really. because i knew all my options all the time just googling medical articles and reaserches.
i spent around 1000bucks for nothing. how stupid i am?
one more reason to hate myself even more.
and eation more various food haven't helped me for 2019, so i'm thinking to hell with that. and have water with lemon routine, because this is how much i hate my current self that i don't deserve even food. this New me isn't me. it's old ugly huge cheeks and arms balding women. very stupid and not funny so there is nothing in me to attrackted too. no hobbies, no activities, just pure Nothing.
feew before pictures and few right now
you'll understand which ones Before
don't you want to put your arm in my hair
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Newjack. I have been using tablet Minoxidil 5mgs once per day for the last 5 months. I got it prescribed in USA. Not sure how much does it help yet. No side effects though.
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whag side effects you don't have?
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hello sad you depress for nothing you have no patch, I advise you to do a review of your teeth the filling can damage the hair, make a review of your thyroid, if you take a pill it can lose hair. you have a non-autoimmune androgenic alopecia more you stress and more sava not gone.
no dermatologist will prescribe xeljanz and even cortisone because you have no patch just a lightening. you are on the wrong track.
cortisone or xeljanz will have no effect on you.
honestly you have people here who have more eyelashes no more eyebrows more hair is living in spite of them, I myself have lived and I do not wish you.
it's like showing disrespect to the person here who, despite the use of the treatments, can not get their hair and hair back.
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It's not disrespectful at all. We are all struggling here! And somebody is more strong then another one, don't try to shame me for what I'm feeling. This is for alopecia patients, not only for AU. We are all sharing our experiences here and it's very rude of you to highligh my "disrespect" when I'm trying to hear useful advice and share my pain. Or do you really think that there is a gradation of different variation of Alopecia? Like, if you have AU - you are allowed to complain, if not - move ahead, you still have something, get out of here?
I did not expect that from you. Honestly.
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