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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 Rapinzel,
i think that it is it is more likely to be TE, unless you have a spot where it is totally bald. That should be encouraging as TE can be resolved within months when the underlying cause is dealt with. To me it sounds as though nutrition could be a major factor, given that you have had an eating disorder and often, even after weight normalises- eating can stil be restricted (it’s a mental health issue - and mental issues are hard to treat). I don’t think, at this stage you need medication, but blood tests would be very helpful to determining what you may need to address in your diet and looking at your thyroid health.
i understand this is concerning for you and I don’t want to take away from how you feel, but many of us on here, who have used xeljanz and other medication to resolve alopecia have done so at the point where we have no hair on our head, some of us have lost all the hair on our bodies as well, so to us we don’t look at your after pictures and think - oh her hair is thin- we look at them and say - wow - she still has hair. To be honest the only way to determine if it is TE or Alopecia Areata is a biopsy. I know you mentioned you don’t want to do that, but biopsies are pretty small and will give you a definitive answer.
I think perhaps readdressing your diet, and also trying to view yourself in a positive light is important to turning this situation around. Believe it or not I am sure you are still an attractive girl, and most people don’t look at you and think gosh her hair is so thin. I understand losing the thickeness you had is difficult, but I really don’t think you have AA and if you do, with your remaining hair there, it is likely to resolve in a few months and start growing again.
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exactly frida!
How long have you been losing your hair?
apart from the hair is hair falling too?
I do not think that it is auto immune because in general you have totally bald spots like pieces and as you go bald completely in 2 months.
so I would be you should you relax do blood tests if not in food deficiency, the thyroid sometimes the fillings already starts from the beginning
go see a good dermatologist.
I will be you I will not worry.
if you really start to see holes and you lose a lot of hair you will consider steroids by injection if you have a bald hole.
and if his empire you can take xeljanz.
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Permalink Reply by Sad_Rapunzel on
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Oh, I saw a lot of them already. Because it's been 2 years now. I loose more then grow. But all these years I have't changed anything in my diet and just recently start to add one apple, or dairy products, or beef (i ate only chicken-turkey before).
Dr. Bruder told me I need to have biopsy, because he saw some small bold spots, but i really don't want to do that. I know it will be a scar, I know it will not grow back..
Nobody ever told me about steroids injections. What are they supposed to do? Is it save to do for person with ammenorrhea, hyperlipidemia and OAB? Yep, I've got them all...
Don't people gaining a lot of weight on it, which is not reversible after all?
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Hi Rapunzel (notice I left out the sad) :)
Thank you for sharing your pics. I know and understand how hard it was for you to post your pics, but consider it a first courageous step to healing...step by step. So now you have to change your nickname to Courageous Rapunzel. See how quickly things can change for the better? LOL :)
It's impossible to say for certain from the pics because there's a lot of hair covering the scalp, but your loss looks more like TE (telogen effluvium), which if it is, is a good thing. It grows back fully once the underlying cause is corrected.
You mentioned you have amenorrhea. One of the common symptoms is hair loss. The typical underlying causes of amenorrhea is:
early pregnancy - I'm guessing you're not
some birth control pills - just fyi
certain medications - have you been on any meds in the last 1-2 years?
severe stress or trauma - you mentioned you had a bad breakup with a BF
eating disorders, anorexia & low body weight - you mentioned you had some issues with this.
So my gut tells me that your hunch is right that you likely don't have alopecia (of the auto-immune kind). The good news is that your hair can and will grow back completely without any "magic" pills. Actually you yourself are that magic pill. But you have some work to do to heal your mind and body and it will take some time maybe 6 months to a year but it's within your reach! :)
xo
TC
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tc that's what i think also it does not look like an alopecia autoimmune areata
for my part in 2 months I had more hair and most of us it's like his
it would be bald spot it a hair density less but no bald spot -
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I will never have hair like this again and I can't live knowing this..
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please please please list the names of doctors in New York, who well educated particularly in this subject..
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Hi. 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 but I was at the very bottom of the spectrum when I was tested. So with my doctor I started taking SLO-Fe supplements. 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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I think we all go through this phase. I know I did. I did until one day the kindest person I know was diagnosed with terminal cancer. She was only 12 years old and suddenly it whipped me into shape and appreciate what I have.
Im not going to lie and say Alopecia doesn’t suck. It does and it’s awful because it’s so unappreciable... but when it comes down to it... we only get one shot at life so we need to do our best to try and make the beat of what we have. I cried the day I had to shave my head. It’s tough... but you’ll get through it. We are here to help with any questions that you have.
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Rapounzel If you think it's alopecia, go ahead and discuss with an expert on alopecia (columbia, yale etc). They will be better equiped to inform you and provide you with an opinion about it.
From the photos it seems it could be telogen effluvium, yet it's still photos and not the reality.
Also, since you have history of anorexia and period issues, it could be beneficial to talk to specialist depending on the reason behind it e.g. a psychotherapist that specializes on eating disorders.
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Permalink Reply by AnakinWildstar69 on
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OKAY...I THINK I HAVE THE SOLUTION TO THIS ALOPECIA AREATA,TOTALIS,UNIVERSALIS ""DISORDER"""....I'VE DONE A LOTTTTTT OF RESEARCH INTO THIS PARTICULAR AUTOIMMUNE DISORDER, AND HERE'S WHAT I'VE COME TO REALIZE...ALMOST ALL OF IT IS DUE TO 'LEAKY GUT PERMEABILITY''' ....WHICH INFLUENCES GENE EXPRESSION...WHICH TURNS 'ON' THE 'AA/AT/AU' PATHWAY...WHICH ENDS UP AS NO HAIR CYCLE AND NO T-REG CELLS BEING ABLE TO ASSIST IN THE HAIR GROWTH CYCLE. T-REG CELLS NEED TO COMMUNICATE WITH THE HAIR CYCLE/FOLLICLE CYCLE..AND IT'S SIMPLY NOT DOING ITS JOB, AND THE RESULT AGAIN, IS AA/AT/AU. THIS IS 100% FACT. SO, HOW DO WE 'RE-SET' OUR IMMUNE SYSTEM TO THE PREVIOUS/NORMAL HAIR GROWTH CYCLE??? TRUST ME, GUYS/GALS..IT'S ALL ABOUT WHAT WE INJEST. FIX THE LEAKY GUT AT ALL COSTS...EAT RAW/WHOLE/SEASONAL VEGES/FRUITS/NUTS...EXERCISE REGULARLY...STRESS AT A MINIMUM...SLEEP 7-9hrs PER DAY...AND VITAMIN-D3 5,000-IU....MEDITATE DAILY..AND MOST IMPORTANTLY, YOU WATER FAST FOR 3-4 DAYS STRAIGHT, TO 'RE-SET' YOUR IMMUNE SYSTEM BACK TO NORMALITY. I FIRMLY BELIEVE THIS IS THE METHOD TO STOP YOUR AUTOIMMUNE ALOPECIA DIS-ORDER, AND TO SLOWLY BUT SURELY BRING IT BACK TO WHERE IT WAS BEFORE IT CHOSE THE 'UNWANTED PATHWAY' WE'RE EXPERIENCING NOW. I'M ABOUT 2 WEEKS INTO THIS AND I WILL POST THE RESULTS..AND SHOW PICTURES..AND 'NO' THIS IS NOT PLACEBO EFFECT..THIS IS CORRECTING YOUR LEAKY GUT, CORRECTING YOUR BODY/MIND/ESSENCE 'UNIT', AND RESETTING YOUR IMMUNE/NERVOUS SYSTEM TO WHERE IT WAS BEFORE THIS IMBALANCE OCCURED. WITHOUT ANYBODY GETTING RICH OFF OF OUR DIS-ORDER, LIKE PFIZER, etc,.,I'VE DONE MY HOMEWORK AND IM ALMOST POSITIVE THIS IS HOW WE REVERSE AA/AT/AU....THEND.
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