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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 Maree on
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Has anyone experienced shedding after being on Xeljanz for awhile ?
Its almost as if the hair is breaking off and shedding. My scalp is very itchy and tingling!!
Its so scary .
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hi newjack how sava is what your fall has stopped? I also have some beard hair and eyebrows that fall, I am in a period of stress because I have the anxiety that all relapse and I will not support it.
I ordered a box of baricitinib 4 mg of expensive
beacon I am waiting to receive it for analysis.
I have a regrowth that is not complete, do you think it can help?
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My hair is still shedding but not as much. My spots are slowly filling in and I'm slowly coming back.
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Hi Kevin,
sorry i I missed this post. Baricitinib May help but be vigilant in looking after yourself as not as much testing has been done on it, but as it targets Jak 2 which seems to be a very strong pathway in alopecia than it could be helpful, and it is not metobolised by the same enzyme either so less interaction with other meds. Make sure you post the analysis results! I have ordered it too and am impressed with the product but have not tested it or taken it (got it as I was going to recommend it to friends and wanted to see the product before that). I think as alopecians we have weird hair cycles, I have had a shed and it has slowed down a lot but it wasn’t like alopecia, no spots or tingling scalp and I noticed that as soon as it drops it regrows so I have a thick undercoat of shorter hair, I actually think it has thickened up a bit since the second lot of hair came in. I think our body tries to normalise the hair cycle that has been thrown way off by losing it all and then starting from no hair. Unless there are distinct spots or very dramatic thinning try not to worry (easier said then done I know!). It may just be a small step backward but I’m sure you will continue towards full growth.
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I am so happy for you and your daughter! My 19 year old son started Xeljanz about 2 years ago. He did have some stomach problems when he started it. Then they went away. But now he has an appetite but gets queasy when he tries to eat a full meal which disappoints him greatly. He's thinking it may be the Xeljanz and that he needs to eat something before taking his am dose. I hope that's it. Perhaps a little anxiety as well. But I think he'd rather deal with some nausea with a full head of hair than vice versa. As a mother, however, I still worry that the problem may be something more serious. And 19 year old boys/men generally don't like to visit doctors over stomach issues. :-(
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hello it's been a year that I'm on xeljanz and for 2 weeks generic xeljanz tofacinix. so I can help you for the side effects for stomach problems I also had periods of pain left side of discomfort in the intestinal level is a side effect I also had big flatulence but it is Period after that you have to check your stool if there is blood you have to go to the emergency room directly. I also had acne by periods too, I also had shingles at the beginning.
now it's been a week since I have a feeling of difficulty breathing and a feeling of irritation in the throat it produces at night at the last take it lasts 2 hours and I feel better after.
I have a complete blood and urine balance to do this
week.
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hello I had his pain and discomfort side left for me it lasts a few weeks and his share, well checked stool if there is no blood, the only thing that can help is to have a healthy diet privileged the white meat vegetable drink a lot of water privileged the complete flour avoids the sugar to practice sport and wait for avoided the diabetes the cholesterol and to have a good transit intestinal me me I am pleased 2 to 3 times a week. Avoid alcohol and bad foods as this can harm your liver. who must already be taking long-term medication.
to better know the side effects tapped on the internet xeljanz side effect. I invite you not to communicate them to your child as this can produce a placebo effect.
have a complete blood test each month. checked the stool. checked his tongue I can bet what will become white intestinal discomfort and taking medication gives the language white color so do not worry
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Your son looks great! My daughter started xeljanz this last November and has some hair coming in! Good luck on your journey!!
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Permalink Reply by Sad_Rapunzel on
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Dear all
hDr. Kabigting is leaving and doesn't accept patients anymore.
please give his contact number or advice same high qualified specialist... I travel here exclusively for him!
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I just started seeing Dr. Lindsey Bordone. She's also at Columbia Dermatology and worked with Kabigting. She specializes in hairloss. Look her up on YouTube, there is a brief video on her.
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