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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 Fighting Alopecia on
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I wish that was as easy as it is to write/say,
It took me several months to establish myself with my current Derm. At some point she did not feel comfortable proceeding with more aggressive treatments and I started looking elsewhere - after calling so many different dermatologist (I have great insurance accepting in and out of network) - no one was accepting new patients.
small update - She called last week leaving me a message stating that she wants me to to go and leave blood work at the lab to make sure i am clear for the "new medication" - I am hoping this means she will prescribe Xeljanz. If that is the case - my next hurdle is to get this approved by insurance... keeping fingers crossed for myself and the everyone else suffering from this heartbreaking disease.
PS Wildstar - Your personal story is amazing and inspiring and very humbling. Thank you for sharing and I pray that you and your fiance remain healthy and safe for each other.
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I am an avid reader of this toppik although only recently i subscribed in this forum
Looks like Xeljanz is not a fully working therapy and the side-effects can be devastating.
Old members like XeljanzMiracle havent updated their progress in photos for a long time
and even worse they take powerful doses of corticosteroids plus to some 3 pills of Xeljanz/day.
Disappointing, indeed.
Alopecia Universalis proves to be more recalcitrant than we could think of.
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I really don't think you saw all the posts in this topic. A LOT of people had good progress and posted pictures in this post, it does take a while yes.
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thats why i said *fully*
Although a few people can see some progress, i havent seen any cosmetically acceptable hair growth yet, a full head of hair apart from Kyle Rhodes.
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Seahawksdad's daughter got 100% full regrowth. He posted a picture some time ago. Page 151.
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This is 9 months of xeljanz for me. It did take about 1-2 months to start working. I was AT progressing to AU when I started it. Had no scalp eyebrows or eyelash hair. This was a selfie of mine at work lol. I've been so happy to want to take pictures again.
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Permalink Reply by sadele on
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WOW! That looks incredible! I'm so happy for you, what a fantastic feeling! I'm about to complete 8 months of xeljanz and I don't have nearly as much hair as you. I really wanting to see my lashes and brows come back. It must be so great to have those again :) I truly am thrilled for you!
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Thank you sadele. It has been a happy time for me. I am sure we can all relate to the sadness of alopecia. I do feel that this happiness will be short lived - I worry about how I will continue to pay for this medicine and the side effects. After my wedding I hope to get pregnant so that will mean stopping xeljanz for me. Only time will tell. But I will enjoy it for now.
Also, I only have about 75% brows and 25% lashes. Eyebrows are tattooed and wear false lashes so hard to tell in this picture. Sadele any growth at all is a good sign. At least that's what my derm told me from the beginning. Continue to keep the faith you will have your locks again whether it be xeljanz or another drug in the future. The breakthrough in alopecia treatment will only get better from here on out. Keep us posted on here. I'll be waiting for the day until you post your new pixie cut! :)
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Wow you look stunning Katie! Must be s great feeling ! Are you going to stay on your dosage or lower it?
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Thank you Singh! Staying at the two pills a day for now. How are you doing? Have you seen dr Bordone again?
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Katie so happy for you.You will make a beautiful bride!Xeljanz is not working for me but I agree there will be new drugs in the future.Maybe I need the jak 1 and 2 hopefully that will come out this year.But sad to say you are so right about paying for these drugs I spent so much money already and it didn't help.Hopefully that will change.
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Thank you Football fan! I am so sorry to hear that xeljanz didn't work for you. I wish we knew why it works well for some and not others. I know the research being done though should help us figure this out. I have no doubts that jak inhibitors will be the best treatment for alopecia (besides stem cell treatment). Best of luck to you and don't give up hope just yet.
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