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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 sadele on
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My derm put me on 6 pills 1x a week. Is that the dosage you're on? He also wrote me a prescription for Xeljanz so I'm in the process of getting it covered by insurance. I'm ready for this to be over.
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Permalink Reply by Imran on
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I am looking to get a prescription here in Toronto, Canada. Is there anyone here from Toronto who is taking xeljanz? If someone who can guide me to the right derm, who has past exp with this drug
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Oh, I'd love to see your latest picture! This is so inspiring!! How are you feeling by the way? And are all of your blood tests are okay?
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Good Afternoon Everyone,
I just officially joined this website after months of looking at heartfelt posts and how we are all impacted by Alopecia. We are a year plus into this journey after my teenage daughter had 100% of her hair fall out over the course of a few weeks. We tried shots, creams, gluten free diets and even iron infusions...after visiting the Mayo Clinic in Rochester we are 6-7 months into weekly methotrexate shots. We have seen regrowth of about 25-30%...lots of white hairs on top but still no real "regrowth." My question to the group is this...I've been corresponding with Dr. Brett King regarding the xeljanz treatment. My daughter is 16....do we continue to stick to the methotrexate or switch to the xeljanz treatment? Our local Dermatologist is still very cautious about using a jak inhibitor and wants to wait until the clinical trails are completed. As a parent, I want to do the best for my daughter. I'd would really enjoy hearing the feedback from the community. Thanks so much!
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I am on my second trial. I did Ruxolitinib for 3 months, took a month off, and switched to Xeljanz which I have been on for 6 weeks. I had no success with the first trial, hoping for some positive results on Xeljanz. I am 44 years old, so in a little bit different situation than a 16 year old, but I can tell you I have zero side affects and done close monitoring of my blood. I realized everyone is different.
I wish you all the best, I feel for anyone that young losing there hair. I am very self conscious at my age, couldn't even imagine being a teenager.
I will update any positive results on my end.
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That's interesting. I don't seem to be having substantial regrowth that I expected on xeljanz and I've just completed 3 months. Unfortunately I am part of the crowd that needs to be on the drug longer. I also think that I should be on 15-20mg a day of xeljanz, considering my first month of xeljanz yielded faster results that sort of seem questionable now considering my hair is still shedding. There are areas on my body that have responded, especially my front hairline. They're getting thicker but not very quick at all. I'm actually trying to switch to Jakafi(ruxolitinib). My xeljanz copay is used up and my insurance doesn't cover xeljanz for any use, so my next route is Jakafi since my insurance covers. I am going to a hematologist to try and get it. If that doesn't work out on the insurance end, I will be working things out with xelsource. Also, it seems as if Jakafi worked quicker in trials considering the higher dosage and it being a Jak 1 and 2 inhibitor. What was your dosage?
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I started out at 22.5 MG/day and quickly went to 40 MG/day. I maybe should have stayed with it longer? I think my derm is trying anything at this point. He is a frustrated as me. I lost 100% of my body hair in 2 months. It had been thinning prior to that off and on but we had success with cortisone shots then nothing worked and it accelerated to the point is at now. I have thought 15 - 20 MG of Xeljanz may jump start some growth.
Find it odd insurance covers Jakafi and not Xeljanz? That had probably been discussed and I have missed it. They gave me two years of refills for Jakafi.
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What insurance do you have? Does not make sense that they would
Cover jakafi which is 10k a month but not xeljanz.
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Tufts
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Hey summer I just sent you a friend request. I'm currently trying to get jakafi and I have a few questions
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Yeah my insurance doesn't cover Xeljanz for any purpose as well. Jakafi is a cancer medication so clearly that would be on the list of covered medications, since it is life threatening. Although my insurance would undoubtedly refuse prescribing me Jakafi for Alopecia, hence why I am seeing a hematologist.
40 MG a day?! And no reaction?? No vellus hair or anything? And yes it is to my belief that a lot of us will need to be on the medication for a longer period than we have seen in trials.
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