Alopecia World
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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 think we all understand it's related to leaky gut. Fixing it is hard and not easy, different for everyone .
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Permalink Reply by Rascalx2 on
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Let me know how that works out for you, i followed diet for auto immune disorders for a year religiously, i didnt grow a single hair, the only thing that worked for me was 20 mgs of xeljanz, I have exercised, eat a good healthy diet and meditate daily for over 25 years, alopecia hit like a prize fighter and knocked hair right off my entire body, good healthy diet is great and working out is great , but it s rarely a miracle cure. Good luck
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I agree, I worked it by diet as well for years, my dermatologist is big on giving up 100% dairy and that definitely helped but certainly didn't stop the hair loss completely. But finding my correct ferritin level did through trial, error and keeping a chart. When Rapunzel mentioned her blood work was "normal" by three drs I think that was missing my point. Ferritin can be normal anywhere from 20-288. Everybody is different but finding my zone of around 90 has brought my hair almost back to normal. And this is 15 years of fooling around with everything I could try! It was key for me, that's all I can speak to. Good luck to all
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Reply by Kathy
Hi Rapunzel... I think I replied incorrectly so I'm posting again to be sure you see my comment. Your pics look similar to what I have been dealing with for about 15 years but I’ve had success with trial an error. Most important tool I found was a ferritin test, the amount of iron in your blood stream. The “normal” ferritin range is huge 20-288, but I was at the very bottom of the spectrum when I was tested. So with my doctor I started taking SLO-Fe supplements and I keep a chart to track the levels. The trick is you have to test at least every 6 months because you don’t want to get too high as that can cause problems too. Right now I only take the supplement every 3 weeks to bring it down a bit. For me, if I stay in the 90’s my hair is awesome. I have been up to 50% loss so I know how you feel. I was told I had Alopecia, my doctor never did a biopsy. I also tried the shots and for me it was a total waste of time and money. Dr suggested other supplements but The ferritin and giving up dairy 100% I would say are the two most important things I did to bring my hair back to my new normal don’t give up! kathy
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Permalink Reply by Sad_Rapunzel on
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Thank you dear Kathy...
All my blood tests were accepted by at least 3 doctors like "normal" abd "healthy". I don't have any deficiencies....
I have really really high Bad cholesterol and really really low LH and estradiol :(
I just start to add fairy to my diet and now you write this... :(
You see, I start to loose periods and hair when I cut off dairy, nuts, seeds and fruits... Maybe extra stress and not sleeping enough. And I was afraid to try eat cottage cheese for 2,5 years... And just recently said to myself:"hell that shredded abs, i'm bald. f*ck this fitness industry. anyway i decided to die if i'll loose more hair, so why not try to eat all that i restrict". and so far just 3-5 days i add only cottage cheese and one green apple. and again i read about this "dairy is evil" :(
what should i doooooooo ;(
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And I agree about the leaky gut, I didn't do everything Anakin suggested but I did start a good quality Pro & pre biotic and I think it helps.
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I use Floragen - Digestive. Its refrigerated so in Chicago they keep it in the pharmacy at most grocery stores, Walmart... The pre biotic is by Wellness Works and its called FOS Powder. That I can only find at a small pharmacy in my town.
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I agree Rascal2. Many on here have tried diets and religiously followed them for years with no progress. Being healthy in your food choices and knowing what you body runs well on is important but unless your body was going to go into remission anyway I don’t know if diet would impact much on AT or AU. Perhaps for TE it would. Autoimmune disease iexists in every culture around the world - many of which have vastly different diets. If diet has that much impact so does the air we breath but unfortunately none of us can stop breathing (unless we die) so it’s about managing to be as healthy as you can while utilising the amazing scientific knowledge that we have developed as humans.
Eating healthy, staying positive and exercising moderately is helpful but for extreme cases of alopecia I don’t know if it would be enough to bring back hair. Having said that maintaining your health on xeljanz is important so do what makes your body feel stronger.
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Hey all,
It's been about 2.5 months in my increased dose .I have about I would say 6-8 spots and general thinning.
For those that haven't followed me I had full regrowth in about 6-8 months on 16mg and lowered my dose to 10 mg. I was on the lowered dose for 3 months before switching. During that time period I had spots and shedding.
I switched to 20mg mg January 17th and one spot is about 60% filled in, the other about 50% and 3 are just starting to grow. The rest are pretty bare .
I'm still quite nervous that this won't work as good as the first time around. I basically found a new spot last night but it must of been there for a bit because it already has a little bit of regrowth.
I basically have come to terms that it this will work, just because this time it is AA it doesn't mean it will work faster, it will most likely take the same amount of time it took me to go from AU to 100%..
I am going to start using minoxidil on my soots, I just don't like how it makes my hair feel... I'll post some pictures later on during the day .
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