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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 Patchesforlife on
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thanks return life. Do you think having the cold though it will cause attack on hair again? Im thinking having cold will cuase our immune system to work right
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Yay! So glad you got a doc to monitor your bloods for you so you can be safe. I think the main thing is if you get sick with colds etc just take it essay and rest. Your body will hopefully balance it out. With xeljanz the targeted nature of the drug hopefully will mean that your body still heals itself in other areas. I'm starting my steriod pulsing today (mini pulses as the wait list for Iv is too long) so I'm a bit nervous about that. Steroids are not fun.... looking forward to hearing how your going. It can be a long road - hoping it's faster for you then me. Hoo him...5 months in... eye lashes are doing great- the rest a bit slow....
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You just started therapy... for the next month try not to think too much about it (it's impossible I know)
You will go how many times in front of the mirror. Personally I think the responders rate of xeljanz is very very high... Even in cases of severe AU. Unfortunately most responders do not attain 100% density, thickness etc... And the dosage is obviously a big part of the results...
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Definitely think return to life is right about dosage. I've upped my dose and have noticed my lashes are coming in gang busters now (in one week my left eye is sprouting lashes really quickly.) head is still looking bald with some longer hairs starting to come out of the blood thin stubble. But it's time dependent too. Reading the latest study it appears that slow responders often do as well as quick responders, if they are able to increase dose with insurance and/or other help(and sometimes augment with steroids to kick along) that response rate is in the 70% range even for severe cases. One you get the regrowth is established then you can experiment with dose decreases.
I was reading too that the main thing that appears to be consistent amongst non responders is long duration of illness. This is not always the case but I think the paper I read said 10 years is timeframe they see most of the regrowth, with over 10 years being a bit more complex. Doesn't mean it doesn't happen just that I think the success rate goes down a bit.
its tough for us not on insurance to cover the dosage increases though and if your body chucks a tanty and your bloods go cray cray then it can be difficult to maintain the dosage increases for long enough to see results. I'll let you guys know how my steriod pulsing goes. In combination with xeljanz supposedly when you stop the steroids the xeljanz maintains the hair growth. Fingers crossed!
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Playing with dosage is how I got my facial hair back... 2 things u gotta be careful with higher dosage cause it can make u stop the treatment.
Acne ( don't take this one lightly. I've seen some case of extreme acne with very high dosage.) Awesome regrowth but severe acne is a big No. Remember I said severe acne
Cholesterol increases. High dosage can bring ldl very high and doctors are careful with this one. Maybe in this case you can add a statin...
But keep in mind like all other strong treatment the adverse effects must not be taken lightly. Because if they become too severe u need to stop it and then we lose our gains...
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may i ask u a question. if i just got aa like a month ago and i take tofa for recover and maintance for a year or more cold i stop the drug? will it be replase?
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If you got AA a month ago it might recover by itself. However from what I understand if you stop xeljanz there is a likelihood of relapse but nothing is certain. All our bodies are different and some react differently. If you "trick" your bod into remission it may start to accept hair without needing the xeljanz however if it still hardwired to attack the hair follicle as soon as you remove whatever is protecting the follicle then it will fall out. Bodies are weird and unique....
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I personally know someone AU for 30 years. He stopped xeljanz after 1 year of taking it. I told him 'hey u might lose it all...' he stopped cause of some sides...
5 months since he stopped and guess what? He lost some the first month he stopped but he suddenly had good growth... I saw him last week and he looked totally fine I could not see any spot of alopecia on him... weird I know...
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that's actually very nice news! did you have all your hair back?
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I got 100% facial hair and body hair back.
My head is around 40% but I don't have patches. It's just overall less density than what I had. On the other hand some is due to male pattern balding hehehe.
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Hey please message me i have questions about xeljanz. i sent you a request
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Wow that's fantastic. Our bodies are all so unique. Do you reckon that for the most part we are all responders but dose and timeframe are what really matter. I mean if we all were able to ramp up dosages indefinitely until we noticed good growth, and then we're able (ie our bodies didn't start playing up) to stay on the elevated dosage for long enough we would all respond or do you think their are genuine non- responders out there?
Im not suggesting anyone do this but it's interesting going forward to know if this pathway is where the cure lies for all alopecians or if indeed, regardless of dose and duration, some people it just ain't gonna work for. Hopefully once the patent expires and treating doctors are more aware we can actually figure out true success rates as opposed to dose limited non-response.
sorry I'm not sure if what I wrote makes sense.
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