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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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Dr Christiano is a great advocate for alopecians and alongside Dr King, probably the most involved doctor in advocating for autoimmune hairloss. I worry, though, SR, that your hair loss is not auto immune - and her focus is autoimmune. Also, most of the meds she promotes are probably harsher on your body than rogaine. I know you are dead against rogaine, but Tofacitinib, ruxo, baritcitinib are all much harder on your body. Jak inhibitors typically cause acne and weight gain, at least at the beginning, and these side effects are probably more significant than rogaine side effects (extra hair on face and body- can be waxed off). If your hairloss is not autoimmune these meds won’t help much, in fact, if it’s nutrition and/or hormonal, the extra stress on your already stressed body could make things worse.
Dont get me wrong- I advocate medicating severe AA, AT and AU, and would treat my kids with jaks if they ever got this condition, but not if it’s hairloss caused by some other mechanism, because a) it wouldn’t work b) it could make it worse. In people with an over active immune system these meds are gold, but if your immune system is weak from lack of nutrients then it could be really tough on your system. Lots of us here are on or have tried rogaine (minoxidil), it’s a pain to apply, but otherwise a pretty easy product to use. What rogaine does is extend the hair cycle, so tiny vellus hairs have the opportunity to become thick mature hairs, it also brings more blood to the scalp to “feed” the hair. One of the great side effects for me are that, when used with lattise (on eyelashes and eyebrows and rogaine on scalp) I have some pretty nice eyelashes (rogaine seems to help Lattise some how). I don’t have extra facial hair outside of plucking eyebrows a bit more often, and my hair line is a tiny tiny amount lower (which I like).... what is it about rogaine that scares you so much?
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My acne has gotten so bad that my doctor who has prescribed me xeljanz has also now prescribe me accutane .I am scared to take it but I am also now considering it since I've had acne since December and it has not gotten all that much better.
I'm probably going to start taking it tonight so wish me luck .
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Hi new jack I also had a strong acne breakout but it's a period without taking anything as a treatment that leaves all alone.
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I would be you I would not take roaccutane that will screw up your liver, you have not tried other treatments for acne?
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I had acne on my back after starting being on Xeljanz. It went away after a year and a bit being on the medication and one year after it has not come back.
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Hi everyone, I've been taking tofacitinibe for a month and a half and I still can not see results, which makes me very sad. in 02 weeks I will do 02 months .. my hair falls both long yarns and small new yarns. I do not have big spots in my head. my alopecia is diffuse. discovered by biopsy. I had to do 02 biopsies to confirm the diagnosis. I took injections at the beginning, but it did not work, it only minimized the hair loss a bit. then I started taking prednisone, I started with 40mg and now I'm at 05mg, but also without much success, it only slightly decreases the hair loss. I went to 05mg last week. I'm afraid to stop prednisone and my hair fall back too much. I would like to try to wait the 03 months for the todacitinib take effect and I finally get out of prednisone. what do you think?
So far the side effects of tofacitinib have been acne and a little weight gain and change in the menstrual cycle. My head still burns a lot.
From December until today I've lost about 70% of my hair. my body hair, eyelashes, eyebrows did not fall, although I sometimes feel that eyebrow hairs fall more than normal. luckily they are thick.
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Hi Carol, do you see any new growths? Prednisone and tofacitinib can not stop hair loss but they promote new hairs to grow. Also, I think your side effects are from Prednisone and not from Xeljanz.
I am on a similar regiment. I started Xeljanz 15 mg on January 1st and Prednisone on January 23rd at 60mg. I was AU. I got first hairs by the end of February.
I discontinued Prednisone a week ago and waiting to see if my hair stays or falls out.
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Hi Nat! I see new hair growing, even before starting tofacitinib and prednisone. the new hair and the old hair fall. they fall but they’re born. I think a lot more hair falls than it borns. hair loss never stops. some people here in the group have said that the fall improves with 3-4 months taking tofacitinib, as well as burning in the head. The weight gain and the acne could be from prednisone. But the change in mesntrual cycle i thinks its because of tofacitinibe. It was regular before even taking prednisone. (Sorry about my english)
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Carol,
I would probably wait until you have taken Xeljanz for 3-4 months to see the results. Good luck!
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Permalink Reply by Sad_Rapunzel on
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Oh, c'moooon, Frida!
You're such a smart women. And you ask me this question :) You know for sure that this product is just promoted by dermatologists for quick results and for extra income. Totally not healthy.
And I'm sure you know that what Minoxidil does is he push all your hair follicles into one synchronized cycle - this is why in first 3 months of using you have extra hair loss, extra shedding.
And theeeeen all the fun starts. So, all your hair now in the one and only cycle, they grow up together and they leave together. So you CAN NOT STOP USING this product, because once you do - all your hair will simultaneously leave your head.
From the moment we born, we have our hair growing in different cycles, this is why season TE for healthy people aren't damaging entire look and volume. Because all head of hair isn't suffering - they are all in different cycles. But WITH minoxidil - it's for entire life. And you will always suffer from any stress from outside - it will always leave your head together, to the baldness. Have you ever seen happy person on Minoxidil? Like really long-term. I haven't. They all start from 2%, then to 5%, then it stops working for them and they just switch brands trying to have that effect, because hair starts to fall.
Also, you told that you have AU, and you take tofacinib, so I don't understand in this point why do you use Minoxidil....
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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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