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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 Brock on
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My hair did stop progressing but it took a few months on Xeljanz. It’s hard to be patient but that is the key. If you are take 20mg a day then I wouldn’t increase dosage... most of my hair has grown back. First it grew back white and then regained color. I still shave my head because there are a few stubborn spots.
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sorry, i m taking 5mg twice daily.(10 mg)..it has been a month and 10 days...
should I wait or increase the dosage?
and how many months did you start to see you hair stopped falling?
tks
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I would wait if you can. I didn’t wait too long much longer than you have and went up to 15mg daily. If you are seeing a doctor I would ask for their recommendations.
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when you increase the dosage to 15 mg daily...
How soon did you start seeing results? i m so anxious..
sorry for too many questions..
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I probably started 15mg after 2 months. I started seeing dramatic results at the 3-4 month mark. How it’s been explained to me is that your hair can fall out up to 3 months after the trigger. So if something triggered hair loss 3 months ago before you took Xeljanz it can still fall out later. So you’ll get a good indication about 3-4 months in if xeljanz is working. I didn’t realize this and when I kept losing hair while on xeljanz I starting freaking out. I think stress and anxiety play a big role in it too. As your hair begins to come back you become less stressed and it helps the whole process. Good luck! I know it’s hard to be patient but unfortunately hair takes awhile to grow.
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got it!
i still feel my head burning.. is it normal? will this stop?
oh god..hope it starts to begin working..
tks for the support!
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Hey Brock. Sorry to ask again..but i still feel my head burning..
is it normal? I think you felt that too right? It got better at the 3-4 months? Tks
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Yes my head would tingle and burn a few months after starting xeljanx. Probably stopped around 3-4 months too. I remember how disappointed I was with the progress because I just figured it would stop falling out. I started taking it on December 4th and I had some decent sized spots but could cover them. By January 7th it had progressed to about 40 percent hair loss and I was forced to shave my head. It wasn’t until a few months after that when I started seeing fine white hairs growing. It took mine several months to regain their color. I am still not at 100 percent and still shave my head... but def. things are better than before. Keep your head up...
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Carol- many of us feel that burning/tingling feeling at the onset of alopecia - for some it can be quite painful and annoying. I think it mean alopecia is in an active phase. I know that sounds terrible, but unfortunately as Brock mentioned halting the progress on active alopecia is quite difficult because by the time the hair falls it has probably been sitting in the follicle dead and just waiting to be pushed out. If I could say one thing to alopecians - the shed period is the worst - you have no idea of the extent the hair will shed and there is little way to halt it- it makes you feel so out of control. Even though I went AU, for me being AU felt slightly more “in control” then the shed. I knew the size of the mountain I had to climb so to speak... Take heart that the response rate for Tofacitinib is very high so it’s almost certain you will regrow... but it maybe a tough 6-8 months until there is progress (shed stops, xeljanz works), even if it gets difficult to cope with pull out all your mental strategies to get through by holding on to the temporary nature of the loss.
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Hi Frida, thank you very much for the feedback.
I agree that this part of the fall is worse precisely because we do not know the extent.
I'm taking tofacitinibe for 1 month and a few days. I have not yet seen any result which makes me feel frustrated
. but at the same time I know it takes 3-4 months to make effect in most people which gives me a little hope
. Anxiety has been messing me up a lot. I wish I had started taking tofacitinib before.
I hope Tofacitinib will work for me in those 3-4 months.
Thank you for sharing your experience with us, you are an inspiration -
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TC we're all feeling a bit low right now, but hang in there. Do you see any vellus hairs? You probably know this, but if your hair was already effected by alopecia and was tagged by the immune system it was going to fall out even with xeljanz in your system...
I have a few new spots my self, but they seem to have slowed down and they are starting to fill in. I just saw my doctor yesterday and she believes I also have TE along with my flare due to the infection I posted about earlier.
All we can do to help xeljanz operate better is help the body heal our immune system overall, which means backtrack and see what got us here in the first place and start from square one.
Wish nothing but the best, but I think what we need is time.. It was only a day ago I posted here myself and had a panic attack.. But we're all here for each other!
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Hey NewJack,
Thanks bud, really appreciate the support. So grateful for the wonderful people in this forum. I hope we can all celebrate together someday.
It's hard to tell if there's any new vellus hairs on my scalp because there were some already there all over. It's definitely thinned down to nothing. If I was 30 or 40% 3 months ago I'm now at 10% if that. I do notice some white vellus hairs on my knuckles and hands ( I know right? arrgggh).
I was also wondering if I have TE as well. It just happened over the period of a month. There were new spiky hairs and then a month later they were pretty much gone. My beard stubble seems to be growing a lot slower too. What used to be a days growth now takes 3-4 days. Really gets me down. I sure hope this turns around soon.
Do you take any med for your anxiety like a benzo?
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