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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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Hi guys, while I agree with TC in regards to wishing we had something that deals specifically with the immune privilege issue, I do think many of us alopecians have wonky immune systems that benefit from taking immune suppressants - I have a wonky thyroid- I had thyroid antibodies consistent with Hashimotos- since taking tofa I no longer have any of these antibodies. Likewise many with alopecia have crohns, lupus, diabetes, etc. Alopecia is often one of many immune disorders the individual faces and thus, while immune privilege is an issue, our immune systems are definitely out of whack.
i read a lot, too much perhaps, sometime reading a lot isn’t helpful, but from all my reading and going over the studies there doesn’t seem to be too many catastrophic cases that have come about from using Tofacitinib. There are concerns regarding blood clots, side effects can include weight gain, some cancers seem to be VERY slightly higher in users, but on the flip side there is evidence that Jak inhibitors promote longevity by reducing age related frailty, and that reduced inflammation brings numerous benefits in and of itself.
My view on using Tofacitinib is that I will use it until a better option is available and affordable, to me it’s like someone who is bipolar taking their meds- Alopecia causes me such distress that my day to day functioning is extremely hard (as it would be for someone with a significant mental illness), and by taking this med my life is better. Many people are on life long medication for all manner of ailments, in my mind this is no different.
currently we have to work with what we have. I encourage all types of research into different alternatives, especially for those of us who don’t respond well to jaks, but jaks in and of themselves are a godsend while we wait. Like football fan said- a cure may not be in our lifetimes but now many of us have a viable long term treatment option.
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Hey guys,
Sorry, I didn't mean to ruffle any feathers. I had had a glass of wine (ok maybe 2) after a long day which usually makes me color outside the lines. Please forgive me :)
Like I said, I'm very grateful for Tofacitinib, and JAKs in general. I'm on Tofacitinib just like you (20mg/day). But I'd be lying if I said I didn't have concerns about taking it for long. We really don't have an exit strategy on the horizon, and that's all I was driving at.
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Hi TC, don’t apologise - I think it’s great you are wanting to find something that may work better. I am a bit of a poster girl for jakinhibitors for alopecia only because so far my experience has been good... but there are people on here who don’t even have the safety net of Jak inhibitors to be their bandaid until the riddle is solved. I do think IP is a very promising pathway towards non-responders getting their hair back, and INterluekin 10 therapy is something that would benefit from more research focus and funding. It’s unfortunate but I feel like the riddle of alopecia is not a big priority with many researchers and funding sources, we tend to find solutions by default (ie - they treat something else that an alopecian is suffering from and find it helps the alopecia). Perhaps the more money gets poured into solving male pattern baldness will led to some break through for all types of alopecia including autoimmmine as there is a lot of money to be made in finding something treats a condition that affects such a large proportion of the population. I love your contribution to this forum, and glad to hear your are having some vino and destressing- don’t go anywhere!
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hello I had a period of eyebrows eyelashes beard while being under tofacinix, I had reduced the dose for 2 weeks ... my dermatologist made me a bolus of solumedrol 500 mg for 3 consecutive nights, I have new eyelashes new hair because I did not have a complete regrowth since I have the alopecia areata, it me 2 solumedrol cure I think the slow responder it seems to work better than the batametasone, I tested it too. I'll let you know at the end of cures I have 2 boluses to be done in late June and late July. all my blood work is perfect no side effects for 1 years in which blood clots I did all the tests and it's negative. I had an effusion in the knee that sounded like the same symptom as a phlebitis so I was worried my doctor did all the blood tests radiography irm all is ok. as said frida it is the people at risk who had a clot,
my sister is under tofacinix beacon and I assure you that the 90% of her hair has few eyelashes and eyebrows at the moment but it is only 5 months she is under tofacinix 13 mg. but she's a short 6-year-old alley that she had total alopecia areata,
I think long-term pamphlets are more difficult to treat on the short term.
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Hi Frida,
Awww thanks. I feel the same way about you, and your contributions here, so we're sort of stuck with each other :)
I think I've mentioned this before, but we really need a group hug button!
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I will take it for the rest of my life if necessary. I feel good and I don't feel like my immune system has been compromised at all. I take quite a few other supplements that probably help. I did gain a little weight, but I think it stems from my being so thin and eating everything in sight, trying to put weight on. So now I have to watch it and that's really hard. My doctor told me that the patients she knew of that had cancer, also had Rheumatoid Arthritis and not Alopecia. There might be a correlation, like anything else some people tolerate certain medications and others don't.
Honestly, I'm afraid to even cut back my dose although my doctor suggested I should give it a try. She couldn't guarantee that all my hair wouldn't fall out again. The biggest problem with this disease is that one or two bad days could take months or years to recover from.
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Ra and Cancer, is what I believe she meant. She sounded like I probably didn't have anything to worry about but she wanted to make sure I was informed.
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Hi jenny, I’m from Canada too, just wondering how you buy medicine from Canada. Let me know please thanks!
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Hi guys,
anyone know what's Xeljanz current price in Turkey?
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hello I had to pay 330 euro but it depends on the course of the Turkish book.
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Thanks,when was that? They now asked me 380.
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