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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 mastros on
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Hi, I did notice some tiny little weak hair on my eyebrows first before anywhere else
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Shad and LJBMD,
here is a link to a study/paper of the use of Led and red light therapy, including info on potential mechanism of action, which it is speculation, but studies do show it happens. Some believe it’s a vascular dilator like minoxidilbut it also has shown significant improvement in the decrease in inflammation around the area treated. It seems to increase the growth period of hair, thus allowing hair to grow for more time and helps mature vellus hairs. It’s a bit long winded but interesting too.
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Hi everyone,
It seems that my hair is growing back in my spots on the side of my head, but I'm still shedding pretty bad on top...
It's been about 6 weeks on the higher dose of xeljanz . I'm starting to worry if my next hair cut needs to be a crew cut because of how much I'm thinning out top .
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I mentioned awhile ago that I think my shedding may be related to an infection I had got in August. An abscess that now caused a fistula tract in my body. The doctor said that what I have is now considered a chronic infection even though healing is in the right direction. I mentioned xeljanz and he said I should still be ok to take it since this isn't considered a infectious disease. I am planning for another small operation, where they will insert a device and hopefully take care of this for once and for-all and my immune system will get back on track.
When I first started this journey I was AU and 10mg was working, I was a responder. When I moved to 15mg my hair flourished and I was a 100% by month 6/7.
I am now probably back down to 80% -- some spots on the sides and general thinning up top, this is most likely due to going down to 10mg and my immune system overacting with my infection that I have been dealing with for almost 6 months.
I feel pretty confident that if I had not had this issue on the side 10mg would have worked fine...
Recovery, while a small operation will be another 4-6 months till it is 100% healed and still may have an occurrence 4-6 years down the road. Pretty nutty.....
I've been on 20mg for 6 weeks, before that I was on 10mg for 2 months which made my hair go on fire, and my spots came in.. Due to what I am dealing with now, it would only make sense that maybe even 20mg is not strong enough to regulate my immune system, but thats just an assumption. My spots are growing in pretty slow, and thats just after 6 weeks going up dosage.
At this point I am rambling to my own post -- which I would like to point out the reply system is finally working.
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hang in there. it's a tough ride with ups and downs.
it seems the reply works for me as well
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Thanks. I'm trying but I'm still pretty anxious . I responded really well when I first started and I feel 6 weeks in I should respond just as well when I first started.
There's not much we can do .Probably the main reason why this disease sucks so much.
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I feel you man! Most people will never understand the anxiety this disease has on people. I remember when I first took xeljanx in December and thought... ok I’m on my way to recovery. A month and a half later it had gotten worse and I was forced to shave my head. I find it hard to focus on other things sometimes. I have my good days and my bad ones but I’ll be like..”was that little patch there before, or not?... only to find myself scrolling through picture to see what I looked like a few days ago.
Its tough. The easy thing to say is “we are lucky it’s only hair” but that doesn’t mean it isn’t hard to deal with. Yes things can be worse... they always can... but that doesn’t mean you should feel ashamed that you are feeling sad sometimes.
The thing that has helped me the most is the realization that this is all we got. We got a certain time here on Earth and then we are gone. What would my 80 year old self say to me now? To stress and be anxious about what I have? Or come to the realization that the me before Alopecia isn’t coming back and I need to try and accept what I have. Will I be happy if my hair returns... of course!!! But I’ll probably just be as anxious about losing it again. We have something that most people don’t understand but in reality they don’t care nearly as much about it as you and I do. I vowed to myself (and I’m not 100 percent there yet) that if the Xeljanz doesn’t work and I end up with no hair in the end.... that’s what I got. There is nothing we can do about it and we only chose to let it control us. Easier said than done... but I also think that positivity with this disease can help heal a lot.
Best wishes and I hope everything works out. Sorry for the rambling but I’ve followred your progess over the last year. I think it’s going to all work out for you.
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Thanks Brock, let me know how everything turns out. Please keep inin tou.
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Don’t worry Brock- it can take up to 8 months or longer....but slow response doesn’t mean you won’t respond well. I started from scratch (as in I was totally bald) and it took 4/5 monthes before I saw ANY progress, and now, bar this little shed I’m in at the moment, I got full regrowth. The absolute hardest thing about this condition and this treatment in particular is the waiting... we are desperate to feel like ourselves again and it can feel like we are holding on by a thread.
Its funny, regardless of life’s ups and downs I’ve always felt I got a pretty good lot in life, that kindof changed with alopecia, but I’ve found myself once again being grateful for the life I have now, after recovering on the meds. Yes, I will be on meds probably the rest of my life, but if I had alopecia 10/15 years ago I wouldn’t have had any options!
Hold on to that thread, you’ll feel Like yourself again!
PS: yay reply button working for me now!
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