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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 sadele on
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Hi Katrina,
Your story sounds a lot like mine. The pictures are almost Identical to the pictures I have as well. When I first got Alopecia I had no idea what it even was. No family members have it so I haven't experienced until I developed it.
I started to get this crazy shedding out of the blue. Within months my head looked just like the second picture you posted. I was a 33 year old healthy vibrant person and have always put some value on my appearance, (not vanity). I couldn't accept what was happening so I fought it.. But it took over and I lost my hair. Luckily, it all grew back and my hair was back to normal. I was growing it out for about 1 year and bam, it started to shed but this time it took everything. Lashes, brows and body hair.
Saying I was devastated would be an understatement. It's been 1 1/2 years of dealing with this. I don't like to admit it but it has taken over my life. And unfortunately it has affected everything in it. I've been taking Xeljanz and have some growth in my head and body, but still no lashes and a random brow here and there. However, I'm shedding yet again.
The Xeljanz does work although it's incomplete. July was my 1 year of being on the medication and although I have some growth, it's not enough to go without a wig or hat. You can always DM me and we can chat more if you would like.
I know to well how sad this is... So I'm thankful there is a community of people who can relate.
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Permalink Reply by Katrina on
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Thank you, Sadele.
I'm sorry you have had such a tough run. Were you and your doctors able to identify any possible triggers?? Do you know what your serum ferritin level was?
I just took my first Xeljanz this afternoon... Fingers and toes crossed this is what my body needs to kick start a full recovery...
I will definitely post updates.
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Wow never heard of this type of AA. When my hair started falling out it was diffused also not in patches but I never lost my eyelashes or all my brows. That was nearly 6years ago before xeljanz and if that was an option back then I would have taken the xeljanz immediately.
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Was your hair loss rapid like mine?
Just took my first Xeljanz today...
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Took almost a year.
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Permalink Reply by Xeljanzmiracle on
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Congratulations Katrina!
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Football Fan, you classed yourself as a 'slow responder' to Xeljanz, are you having any results now?
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Upped xeljanz to 4 pills a day to see if that would help kick start some growth. I do have more leg hair not sure about my head.Weird thing is I do have some hair everywhere except under my arms. Would think I would respond fast.I must have a super strong immune system since I've been on xeljanz I haven't been sick even once and it's been over a year.
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I didn't regrow hair under my arms either and I'm absolutely fine with that, lol!
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How long did you have alopecia prior to Xelljanz and how long did you have it switching to four pills is very costly good luck and keep an eye on YOURE bloodwork also
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Hi all.
Its been a while...
33 years old male, 10 years with alopecia. Almost universalis. I had 5% on head left and a little bit on body. I started xeljanz 5 months ago. First month only 5mg and then 4 month on 10mg.
After 2 months:
Awesome improvement for my nails.
More body hair, thicker and darker.
More eyelashes but they are white, a bit more eyebrows and hair darker and thicker a little bit more maybe but nothing spectacular.
Dermatologist told me to stop after 5 months if i do not see regrowth.
I asked him to increase to 15mg for 2 more months and reassess. He accepted. Hope i did the good choice.
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