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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 Rascalx2 on
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the eosinophils were elevated from 9 being normal to 15... by the way Ive never had issue w allergies my whole life but Now i have lot if symptoms of allergies , asthma. Sometimes weezing, On another note I have decresases xeljanz from 20 to 15 mgs a day and although i have lots of spots it is not getting worse, it does not seem to be progressing , it seems good for now.
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Permalink Reply by TC on
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Sounds like you may have a respiratory tract infection which is pretty common with Xeljanz. The body produces eosinophils, which in this case cause inflammation in the respiratory tract, to isolate and deal with the infection. The narrowing of the airways can cause wheezing, and asthma like symptoms. It's most likely nothing to be overly concerned about and should resolve with TLC, but I'd discuss it with your Dr. to be on the safe side.
Get some rest. I hope you feel better soon :)
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Anyone run into any stomach pains/heavy constipation/bloating with Xeljanz? I am at month 3 and was having a few of these issues, but who knows if it was from medication or not.
Side note: I was approved for a year of free Xeljanz from Pfizer's assistance program. If anyone need help let me know
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actually I had this too try to eat healthy vegetables bread full of water much it lasted a few months it's gone then defied its come back do not worry it's nothing serious you can also have the acne per period, I also had respiratory discomfort that went away too.
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I had a lot if adjustments when i first started taking it, i didnt have atomach issues, but i had bad cough for awhile, it went away,
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i feel that im hiding the fact that i have bald spots and thinning hair, it kind if feels like its a combover, you can see my scalp through top of head.. i am so grateful to have the hair i have and certainly the eyebrows and facial hair. My hairstyle is long in spots to cover bald spots because hairstylist is doing her best, sometimes i want to cut it real short and tight but then it looks so bad w all random smooth bald spots... at the same time i dint want to hide what everyone can probably see anyway... am i trying to fool myself? When i see someone with real thinning hair i think to myself ,man just shave it... i cant take my own advice.. i now remeber times seeing people w aa but didnt even kniw about it, i would think “ get someone else to cut your hair”.... i feel so lousy about myself that i thought that way.. i have friends that have lost hair naturally genetically and they look good and just go w it.. does anybody keepnit short even though you have random bald spots? I have to say when celjanz first started working and it was all comingnin white as snow but no bald spots , was a short kind if crew cut, i was so happy , but i was just so happy that it was coming in .. im just rambling ,cant really talk anout this w anyone but all of you guys...
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Hang in there. You’re thinking about it way more than everyone else. Do whatever makes you feel comfortable and don’t beat yourself up.
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I had to shave it off completely when it was my worse. I work in a corporate environment so I couldn’t wear a hat. It was tough but I got through it and after a few weeks I started forgetting I had alopecia. On Xeljanz I’ve had almost complete regrowth... it came in white at first and after several months I got color back. Shaving was much easier than worrying about more bald patches coming and hiding them.
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Hey Brock,
How long did it take to start seeing some regrowth. I have been on Beacon 2 or 3 pills daily for 2 months and nothing yet. I hear this is normal, but I wanted to see what your length of time was before you started seeing hair growth. Thanks a bunch!
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Hi,
I saw first regrowth by the end of second month on Tofacitinib. But I was taking Prednisone too to speed up the process.
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It can take some time, some people respond really fast and others it can take ages. I just try to remind people that slow response doesn’t necessarily mean you won’t respond well. I was 5 months before I responded at all and got it all back so try not to stress if it’s slow. Taking co therapies like minoxidil (oral and/or topical)and steroid pulsing can speed it up but if you are seeing response I’d hold on for another few months before adding anything. Some people advocate diet changes- I think maybe if there is an intolerance but with severe cases I think diet only makes a very very small impact. Personally I take biotin and vitamin d (because I struggle to stay in normal range) and iron as dictated by blood results. Generally just being kind to your body- no crazy diet restrictions but healthy, exercise if it soothes you, meditation etc, these help the journey a little as the anxiety that comes with alopecia can be full on.
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Hey Brock,
I work in a corp environment too at a start up. It was super difficult at my worst. I don't see myself ever leaving this world unless I get a remote job .
How were your coworkers? My boss was not sensitive to the situation at all, but after I had a discussion with him I think he understood. Now that I'm on xeljanz, I try not to stress but thinking about bow I may deal with this again in a corp environment does stress me out... Especially if I decide to leave and go somewhere else.
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