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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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Replies to This Discussion
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Permalink Reply by IcarusAlopecia on
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Everyone will tell you this diet or this for is good or bad for you. I mean, whatever works for you works for you.
I think logically, any doctor would stop once it's done it's job to see if it's needed.
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I also recently found about https://www.patientslikeme.com that is a platform that is trying to shift the information to be patient driven and less doctors/pharmaceuticals dependent
It could be a platform in which we can help other people with AA.
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did anyone notice that sephora has model with alipecia?
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So I'm feeling a bit blue. I'm four months into my treatment.... and I've just upped my dose to 20 mgs- anyhow the progress seems slow... sometimes I wonder if I'm a responder at all... there are changes- my lashes on one eye are coming in blonde while the other one has very short growth, my head has a thin cover of white hairs and I've noticed a dark hairs (2 - one each) in my eyebrows. Did anyone feel disheartened by the slow progress at 4 months and continued on to have good results? I'm planning to have steriod Iv pulses but that has been postponed a few weeks due to waiting for a place. I've been Au (bar little bits of hair here and there) for 6 months and my Alopecia started last December. My doctor thinks i will get results but that I have to be patient. It's hard to be patient though when your bald. It took a fair bit of convincing to get my husband on board for xeljanz (cost) and not having much to show him makes it harder. Anyhow, did anyone felt the same way at this juncture in their treatment and went on to get good results? What helped you stay patient without going a bit crazy? I see some amazing results on here and am so happy for people and hope so much that in a year I too will be sharing photos of a head full of hair. Gosh this condition is hard...:(
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Same for lots of people.
U become obsessed with the mirror. One day u think u are a responder another day u realize these little white hair are nothing...
Increasing dosage usually brings results after 2 months but it's not ideal.
Cholesterol and acne are 2 common sides for xeljanz.
But increasing dosages also means increasing costs.
It is hard...
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Loosing hair again
Hey everyone
after having xeljanz for 2 years exactly and getting 99% of my hair after loosing it totally for about 2 years. I noticed 2 alopecia spots this month. keep in mind that I started in 24/11/2015 having 2 pills a day then I decreased the dosage to be 1 a day after 5 months which was 1/4/2016. and am on this dosage till now but suddenly I found out these 2 spots.
by the way I tried to make it 1 pill every 2 days but immediately I noticed hair shading in the 1% that had not been covered with hair. so immediately I went back to normal dosage which is 1 a day.
now I started to increase the dosage to be 1 pill a day and 2 pills the after day and so on.
Does anyone have an idea ??? why is that happening ??
here are my pictures collage from the beginning till now.
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hi gogi! did u ask ur dermatologist abt it? maybe you are having a flare and need to up your dosage?
All,
I have question what are major sideffects known or you have experienced after taking xeljnz? Thank you
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hy , YOU ARE THE ONLY THAT IT WORKS TO 1 PILL IN DAYS I SAME YOU HAVE TO STAY AT 1 PILL A DAY AS THE RISK IS LESS FOR YOUR HEALTH
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hi Kevin? what happen to interleukin low dose study you joined?
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are you back on 2?
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