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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Related Post on Alopecia World:  

Xeljanz / Tofacitinib

Olumiant

Jak Inhibitors

 

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Permalink Reply by carol on May 8, 2019 at 11:01am

Hi Carlie, how are u?

how is your hair?

Permalink Reply by AnakinWildstar69 on March 20, 2019 at 5:21pm

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.

Permalink Reply by Newjack on March 20, 2019 at 5:54pm

I think we all understand it's related to leaky gut. Fixing it is hard and not easy, different for everyone .

Permalink Reply by mastros on March 21, 2019 at 4:07am

Leaky gut is a myth.

Permalink Reply by Rascalx2 on March 21, 2019 at 4:50pm

Your caps lock is on

Permalink Reply by Rascalx2 on March 21, 2019 at 5:01pm

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

Permalink Reply by Kathy on March 21, 2019 at 5:18pm

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

Permalink Reply by Kathy on March 21, 2019 at 11:09am

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 

Permalink Reply by Sad_Rapunzel on March 21, 2019 at 11:43am

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 ;( 

Permalink Reply by Kathy on March 21, 2019 at 11:19am

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. 

Permalink Reply by LJBMD on March 21, 2019 at 1:13pm

What brand of probiotics did you use? There are so many...

Permalink Reply by Kathy on March 21, 2019 at 5:54pm

 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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