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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 nzahir on
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Is it bad to shave it off until all parts start to grow at once? Just scared of how it will look when/if it comes back patchy
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Also if I microbladed my eyebrows, eyebrow growth should be fine/normal correct?
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I had mine micro bladed prealopecia to enhance shape etc, that was a god send when alopecia hit and the hair just regrows over no probs- just super shapely brows. The only issue I could imagine would be if the hair is significantly lighter or darker then the micro-blading ink, which can be altered with products to dye the hair. So don’t worry about that. Also shaving until you get full “stubble” would be fine though harder to keep a track of progress. Ultimately try to do whatever puts you most at peace and comfortable. I wore my wig til I had enough hair to have a pixie cut- I just found explaining to everyone too emotional - and didn’t want to constantly be tearing up. So when I did my reveal I came out to my friends and to everyone else (shop keepers, some more distant work colleagues, friends of friends of friends- I just pretended to have tried a new style.
Whatever makes you go through this journey with less anxiety and feeling comfortable then that’s the best way I reckon!
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Hi nzahir
Don’t worry, I had also micro bladed after I lost my eyebrows because of AU. After starting Xeljanz the hair regrows over and no problem ,same shape brows but lighter than the micro-blading ink, which I altered with dying the hair.
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You're a beauty!
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You're a beauty!
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Hi Carlie,
you have already mentioned you buy Xeljanz from Beacon and they ask for prescription and copy of your passport, I am going to order fromBeacon . I send an email and they send me invoice and didn’t ask for prescription and copy of my passport. Did you transfer money TO HSBC-Hongkong bank?
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Permalink Reply by serg navaro on
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I just want to say that although Xeljanz does help in some cases, it doesn't seem like it`ll ever be for Alopecia . I was taking Xeljanz for 2 years and grew back about 50% of my hair but decided the risks just were not worth it. I was getting colds more often than usual and gained weight. Everything i grew back fell out within a month after i stopped taking Xeljanz. There seems to be a lot of buzz with new treatments coming out soon so I decided to be patient and just wait for an actual treatment for alopecia to come out. Ive had alopecia areata for 16 years now so waiting a little longer wont hurt, im still very hopeful that there will be a treatment soon!
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Hi Serg,
im sorry xeljanz wasn’t for you. It’s very individual what we feel comfortable with. I do very much hope more treatments will come out for us soon. I gained weight on xeljanz but not to the extent were it was unhealthy or too much of an issue and have mostly returned to my previous weight through being stricter with myself. I know that xeljanz is a immune suppressants but weirdly enough I seem to be healthier on it then off... example - right now everyone in my family has a nasty cold and I am the last one standing. Prior to xeljanz and other immune suppressants (which didn’t work with the hair which is why I moved to xeljanz) I was sick with some sort of cold or flu pretty much every 4 to 6 weeks, and had massive issues with unexplained nausea. Once I got on immune suppressants these problems reduced dramatically. My immunologist thinks that an over reactive immune system was actually hurting my body and weakening it.
right now, following some stress re work and losing a beloved family pet (18 year old dog - id owned her since college) I am having a very minor shed- I am hopeful this will resolve and believe it already is. But I understand totally that for some people xeljanz isn’t the solution - sometimes it doesn’t bring everything back and sometimes it just doesn’t feel right. For some the thought of being on a medicine indefinitely is very troubling while others this isn’t a huge issue. I really hope that something better comes out and maybe we can shift onto something that offers more permanency. Please don’t stop coming to the forum- I’ve grown attached to everyone on here and often wonder about those who disappear!
x
Frida
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