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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 Joja101 on
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Hey Carlie , I did a biopsy a year ago - acute alopecia was the result. Since then I've seen Dr. Bordone in NY who confirmed it.
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Hi Carlie - what are the side effects to pulsing steroids? Is weight gain one?
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Joja,
I see Dr Bordone too! Let me know what she says. She's great but wondering what her plan for you is. She helped me go from 0 to a full head of hair.
Granted I am shedding a bit right now and she's not concerned. If she recommends pulsing or minxodil let us know.
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Hey Joja - I'm in the same exact boat as you. It will be 8 week or 2 months on Xeljanz this Sunday. No results. Still shedding a ton. I see Dr. Bordone too. Ugh
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Hi Joka and Dnp, the medication needs at least 6 months to establish itself - especially if you are in a “flare”. Basically hair that has been “tagged” prior to the commencement of Tofacitinib still needs to shed -so up to month 4 you may see continued loss - the hair cycle is around 3/4 months. Once the shed stops then it may take another hair cycle to establish growth. Unless you are losing new vellus hair, than the hair that is falling out may indicate that new hair are in the follicles and have pushed out the old “dead” or “tagged” hair. I had two patches and then diffuse shedding until AU- it took 5 months and a steriod pulse to see any hair. By the time I started Tofacitinib I had lost all my hair so I didn’t shed during those early months- but I expect if you have hair to lose when you commence treatment then the beginning of treatment this will continue to shed and may even increase at the 3-6 month mark as the new hair enters the follicle.
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Definitely good point and interesting theory. I thought about this myself - that you cannot notice results right away since hair works in cycles and takes about 3 months to cycle through each.
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I think the availability and price of Ruxo put it out of reach for many unless they can somehow manage to get insurance cover or are able to source and dose a reliable powder source. Baricitinib is offered by Beacon and may also work if Tofacitinib isn’t doing the job but there aren’t as many studies on safety etc which concerns some people. I do think Ruxo works on some who don’t get a good response with Tofacitinib and am hopeful we can find a good generic that offers the Med for a reasonable price. All in though - with all these meds they need months to work (even up to a year) to start seeing results.... so if starting a Ruxo or baricitinib it needs the user to have the emotional capacity to dedicate a decent chunk of time to see if they get results. This is hard after many have had disappointment on other treatments and why alopecia is such a hard condition to treat.
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Hi Frida, are you still using any topical shampoo treatment or minoxidil? If so how often?
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Hi Carlie, I use minoxidil at night- that’s all at the moment. I tend to go through phases where I am religiously taking biotin too, and then run out and forget to reorder. I use a “hair loss” shampoo but I think it doesn’t do much other than give me a feeling I am doing something extra (mind tricks lol). I keep taking the minoxidil as it’s easy, cheap and I do think it helps thicken to a degree. I think over time the hair thickens up on its own but just being in good health and ensuring you keep deficiencies at bay is a good idea. Our hair will always be on a bit of an unusual cycle because we lost it all at one time and then regrew it all at one time so I expect there to be sheds here and there. I think it’s just a matter of committing to the meds (if you do get a response from Tofacitinib- understand some don’t and don’t mean to suggest this is a lack of commitment either) and the treatment plan, adjusting dose as necessary. I have noticed with me when I get a bit stressed I seem to shed a little more (not noticeably to others but I notice because I am a bit paranoid....), it coincides with me feeling a bit “speedy” and often this is when my thyroid numbers bump out a bit- so I think when I am stressed my hashimotos may get more active and this in turn causes my alopecia to kick up a notch... but staying on the treatment, adjusting dose up for a short time and trying to eliminate the stress seems to resolve this effectively. By being intuitive with my dose I have Managed to see off a few sheds without noticing any loss of thickness and now 2 years plus of great growth. It’s a life long management plan but it’s worth it to me as my life now is like getting a second chance at being myself!
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