Alopecia World
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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 cws on
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About 8-9 months. The first month was half-dosage. I have stayed at the recommended dosage of 2 pills a day. Are you AU? To answer your question...if you have had no hair on your head for quite some time then I would say "yes" this is very positive. I do believe that these meds will work for a large majority of people with this condition. Having ANY signs of growth after years of none would suggest it is working. 6 weeks is not long at all on this....give it some time.
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Thanks, I am AU, but only turned about 4 months ago,,, was AA for two years prior. I know its early, but I keep thinking about Kyle Rhodes who had a full head of hair in 8 months.
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I really think there is layer to this that revolves around how sensitive your immune system is to the problematic protein. I believe most people will benefit from the meds but on separate timelines. Don't be discouraged if it does not happen over night. Any progress means it is working.
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Thanks so much. I want this to work so badly and it really helps to see others who have been on it for much longer having good results even though there is definitely a time variation. Your explanation makes sense.
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I absolutely agree with this. I am now beginning week 8 and there are still some areas that don't really appear to have any vellus yet. For instance, my temple peak hairline had been indented about an inch or two for about 4-5 years now, and the peak (closest area to eyebrow) has began showing vellus that are now turning brown. However there's still a small part of it in the same region hasn't showed much yet. It started to scare me in thinking that maybe it was scarring alopecia. But that is unlikely considering how many times I've lost and regrown (and if it was scarring the peak wouldn't have shown regrowth)
I have an appointment with my dermatologist next Friday. Going to do blood work and will discuss upping to 15mg. Part of being the pioneers of this treatment is that we are all still learning from ourselves and from each other. However it sucks because I am extremely curious to see what would happen if someone were taking a 20mg or even 25mg daily dose. Maybe 10mg is the reason why it is such a gradual thing for most of us??
Those who have a head full of vellus hair seem to have growth MUCH faster; as seen with that woman who is documenting her growth on Instagram that Justin shared with us. She is on week 8 with a full head of terminals. If I were to go back in time, I would continue with squaric acid treatments until I achieved vellus all over. Then I would start xeljanz.
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Permalink Reply by AlopeciaDestroyedMyLife on
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@Tamer,
It's possible that a dose increase may help. I know someone who is on 20mg a day and nothing yet but he has had alopecia all his life. With time I believe we will eventually see something happen.
The immune system has to be suppressed enough for it to stop its assault on the hair follicles from then it's up to the follicle to enter the growing stage which may take quite some time depending on the individuals circumstances. Increasing dosage in these case would make no difference in time period because the hair follicle has to effectively "relearn" how to grow.
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Permalink Reply by traci on
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Hi all -- I've been away for awhile, but catching up now on all these posts. I've been on Xeljanz for about 5 months now, and seeing small progress (my eyebrows and eyelashes are growing back).
I'm curious if anyone else taking Xeljanz have experienced or recorded any side effects?
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Hello all,
I'm new to this forum but have had various forms of alopecia for over 20 years. I have tried everything for my AU of the last 2 years. I'm excited to have an appt at Yale with dr Brett King. I'm excited for chance at xeljanz but I'm worried how to pay for it. I'm familiar with the Pfizer Co pay card but it will still be costly.
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Hello all,
I'm new to this forum but have had various forms of alopecia for over 20 years. I have tried everything for my AU of the last 2 years. I'm excited to have an appt at Yale with dr Brett King. I'm excited for chance at xeljanz but I'm worried how to pay for it. I'm familiar with the Pfizer Co pay card but it will still be costly.
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Hello everyone,
I thought I would give an update on how things are going for me. So far, all good news.
- 100% of my eyebrows
-100% of my mustache
- 100% of eyelashes
-90% of my beard (facial beard, my neck still has about 70% to grow)
- The large majority of hair on my head is now terminal (I have a couple of resistant spots that are slowly showing improvement). 75% of my head is terminal hair.
-30% of arm and chest hair
-70% groin area
- 0% of leg hair (weird huh?)
I have been on the drug roughly 9 months now. The first month was half dosage. The remaining eight have been on the recommended dosage of 10mg per day (2 pills per day).
No side effects thus far...although lately I have had some acne, but can't yet confirm this as side effect.
I plan on staying at this dosage until everything has grown in. Once all is in, I will go to half dosage and monitor from there. At that time, I am hoping the results of the ongoing studies will give us some more insight on maintenance. Once/ if Baricitinib is FDA approved I will likely jump horses over to it (due to the safety profile).
Exciting stuff is happening...I am sure there will be more drugs to come. Hopefully something for everyone.
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