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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 alopeciaguy1990 on
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Thanks Brock! So what is full recovery for you? full regrowth with its normal color and thickness?
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Everything is pretty much back to the way it was prior. Thickness is definitely back. I have a more salt and pepper look but that’s no big deal. I probably had 40 percent hair loss. It started in June of last year and progressed until probably the end of January 19. I started Xeljanz December 1st and for the first few months hair still fell out. It didn’t fall out any worse than it had and it is tough to not just give up on it. So far it has worked great for me but alopecia is a crazy disease so who knows. I had a few small spots throughout my life but nothing like I experienced last year. Mine got so bad I couldn’t hide it and it was probably good for me that I couldn’t. I shaved my head which was hard because I work for a large corporation in a large office but people are understanding. I got a lot of looks but it was nice to know if it didn’t get better I had my new look and that is what it would have to be.
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That’s awesome brock and so inspiring to hear. I have several spots on my beard and they started about a year and a half ago. i just started on xeljanz last week and have my hopes up. we will see! Thankyou so much for your input
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Hey Brock I started xeljans two weeks ago and still have hair falling out. You said that you had the same thing happen. did the hair regrow that fell out after you started taking xeljanz?
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also just wondering when did you achieve full regrowth and how rapid was is from the start of the initial regworth?
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I was shaving my head everyday so it was hard to pinpoint the exact time everything grew back. I will say that it grew back the same way it fell out. So the last spots to fall out were the last to regrow. They would grow back white and then after about 2 months color would start to form. I let my hair grow out in July because the is when I felt I had full coverage. So really about 6-7 months in total.
good luck to you. I know it’s not easy. I
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What dose were you on? Did you find it safe to take (ie were you not worried about the side effects etc)?
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I take 15mg a day. In all honesty I know it is “just hair” but it was also highly depressing and playing a huge impact on my life. As much as I tried not to care... I did. It was impacting my social life and created lots of anxiousness. Shaving my head helped a lot but it doesn’t mean that my alopecia wasn’t on my mind. Personally for me the risk was worth it. It is also a drug that is used to treat other diseases and is approved for them. I am monitored by my doctor and have not had any elevated levels or warning signs I’m putting myself at risk. I think it’s a personal choice you have to make. I think some people have different reactions to the medication. If I’m being honest I personally feel better on it. Not sure why but maybe my immune system was so out of whack it’s helping control it to a reasonable level.
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Do you have before and after pictures?
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I’m a lot like you Brock, I feel better on the meds than off, not just cause I have hair. I used to, even before I got alopecia, get nausea daily, had a lot of tests which didn’t point to anything, but as soon as I started immune suppressants - the nausea left. I have been on xeljanz between 2 and 3 years and my health has been really good, much better than before- less colds and flus, and more energy. Maybe not related but a bit of a coincidence to happen after commencing the meds.
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