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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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Replies to This Discussion
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Permalink Reply by Frida Rupert on
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My understanding of minoxidil is different, yes, if the hair is in the telegon and catagen stage, where it is in the dying or resting stage waiting to fall out minoxidil will cause it to shed quickly and all at once as the hair below it is stimulated to grow, it will not cause hair in anagen stage to fall out, in fact it will extend this phase so the hair stays in the anagen stage for longer. The anagen stage is when the hair is connected to the blood supply, actively growing.
minoxidil is a long term commitment for many, although some can use it and stop with only a small amount of shedding. I began using it to help the Tofacitinib, as Tofacitinib can have difficulty getting the hair to start growing (hence why many use steriods for a few months to help it work), once hair grows Tofacitinib is good at protecting it from falling.
I have used it off and on, haven’t noticing significant shedding when I stop but notice that my hair is a bit thicker and especially my lashes seem to love it. I am not worried about taking it, because frankly I have taken much worse in my pursuit of hair - methotrexate.... cyclosporine..... these leave minoxidil looking like your fairy godmother.
I’m not telling you to use minoxidil, you don’t want to and that is your personal decision, but I find it curious that you seem eager to take a Jak inhibitor which is much more taxing and intrusive on your body then minoxidil that has been around for ages and the impact of long term use is well known. I am also curious as to why you seem to think your hair loss is autoimmune despite multiple doctors saying otherwise. Now if you were going to regular dermatologists and getting the advice you are getting I would be sympathetic and I’d be poo pooing their advice but you have seen doctors who are well and truely aware of and used to prescribing Tofacitinib and Ruxo and they are still saying use something other then jaks....
At the end of the day you are the only one who can make decisions into what you do to treat your hairloss. If it is not autoimmune jaks will not help. If you want to regrow your hair you have to look at the options presented to you. It just seems to me that you are almost suicidal about your hairloss but unwilling to consider the treatments suggested to you... I understand - I was extremely traumatised by my hairloss, but my approach was that I would consider any treatment to get it back, and frankly I’m glad I did...
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Also in regards to no happy people on minoxidil - well I find that hard to qualify- no one really tells people if they are minoxidil - so there maybe plenty of happy people on it. I’m happy and I’m on it. In terms of minoxidil not working anymore - I think that’s also a simplistic view. Most people on minoxidil are those suffering from androgenic alopecia - which worsens as they age. Minoxidil can help fight some levels of baldness -and slow the progression of baldness but it can’t stop androgenetic baldness, so yes these people often struggle to maintain the results long term, but it would have advanced quicker without minoxidil. Also, as an AU sufferer my hair cycle is already wonky, some hair falls out daily regardless, we have sheds here and there and that is probably a good thing as our haircycles become diverse meaning the whole hair cycle doesn’t encompass the entire scalp. Again as I mentioned above- there are only so many choices - sometimes we have to make decisions that aren’t optimal- so I use a systematic medication or do I remain bald. It’s not a fun choice but I made it the best I could for my situation and that’s unfortunately the case for all of us with alopecia.
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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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