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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 Patchylatchy on
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Hi there! Did shedding stop?
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Hi Friends! I have been on Xeljanz for about 18 months now and have had great success with it. I added Plaquenil 400 mg day into my cocktail - and my hair has grown even more. But then a few weeks ago I noticed that my hair was thinning again, and I could not think of why this was happening. I'm not under any stress (which has been a real problem for me in the past)and the only thing I could think of is that I have been taking Melatonin 10 mg at night to help me sleep. I spoke to the pharmacist and she didn't see any published literature that would suggest its the melatonin. I'm wondering has anyone else had experience with this?
thanks!
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Hey HS, happy to hear about your growth on xeljanz ! And am hoping it's just the hair cycle. However have you tried upping your dose for a few weeks ? Am sure I seen on the thread a while back that someone added plaquenil and there hair started shedding but not sure if they grew it back or just went through a hair cycle.
Kind regards
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Hi everyone
I have been on xeljanz around 10 months
4 months on2 pills then my hair regowth except my brows and lashes !!
I upped the dose 4 pills a day around 4 months nothing yet no brows and lashes !!
Do you think it take time !
That's really interesting
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My brows and lashes took the longest to grow in, give it some more time! :)
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Permalink Reply by Suzie on
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Hi HS, can you post pictures of your hair so we can see what being on Xeljanz for 18 months looks like to give us some kind of hope. I have been on it for almost 3 months and fortunately I am AA with patches and had lots of shedding and not AU. I recently was able to get extensions glued to help, and have noticed some of the patches filling in but with no pigment. I know that we all have to be patient with the regrowth....but sometimes it feels like forever since I had a full head of hair!
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Update: I have been on Xeljanz for 13 months now. At 3 months, it started growing back. I have 85-90% of my hair back, most of my lashes and brows and body hair. 2x per day. It's a long process but I have had AU for 34 years now and this has worked the best. Prescribed because I developed RA. Hang in there and give it
time to work for you! Good luck!
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Hello do you think that xeljanz does more long term effect have you ask the question to your dermatologist. I want to start xeljanz but I am afraid that the hair fall again even in the course of treatment
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Thats amazing! Do you have pictures?])
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bonjour pensez vous que xeljanz ne fasse plus effet a long terme avez vous poser la question à votre dermatologue . je ve...
bonjour pensez vous que xeljanz ne fasse plus effet a long terme avez vous poser la question à votre dermatologue . je ve...
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Hello do you think that xeljanz does more long term effect have you ask the question to your dermatologist. I want to start ...
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Hello do you think that xeljanz does more long term effect have you ask the question to your dermatologist. I want to start xeljanz but I am afraid that the hair fall again even in the course of treatment
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I went to my doctor this week. She rates my regrowth at 95 to 98%, but it is so fine and thin that I feel like it is less. I will continue to take 10mg of Xeljanz twice per day, use Rogaine 2 times per day, use clobetasol nightly 5 times per week, and get kenalog injections in my scalp every 4 to 6 weeks. My doctor added a daily dose of Allegra over the counter allergy medicine in hopes of increasing my regrowth by decreasing inflamation at the hair follicle. I am also beginning to take Tumeric daily. It has been proven to be an effective anti-inflammatory, My hair still doesn't have any pigment. I have been on Xeljanz for 22 months, but my hair has only been growing for 14 months after upping my dosage. I am happy that I have some hair and thrilled to have my lashes and brows, but my hair is still not cosmetically acceptable so I am still wearing my wig.
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