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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 Starshine on
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I have seen on the internet coupons specifically for Xeljanz that claim to discount the drug, some up to 90 percent, depending on their agreement with certain pharmacies. If you look up Xeljanz discounts, you will see them. Does anyone know anything about them or if they work? They claim to work for those without insurance and cannot be used to reduce a copay.
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I am about to start at the end of this week. I just had my TB test done today and if everything comes back negative this Friday I will be starting Xelijanz. I am currently seeing Dr Edmond Griffin at Dermatology Associates of Atlanta. He is not currently seeing patients until June. He has two patients about to being Xeljanz treatments including myself. He seems to be a great guy and is excited about what Xeljanz is showing in clinical trials. Good luck and let me know if you need any more information.
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Permalink Reply by Shanna on
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Anyone tried getting their prescription through a rheumatologist instead of a dermatologist? Since rheumatologists treat autoimmune diseases and Xeljanz is a rheumatoid arthritis drug, that's the route I took. Mine was able to present my case to my insurance company and they're covering the full cost, at least at present. We all know alopecia is more than just superficial, but I wouldn't count on insurance companies to see it as that. Having our disease presented as autoimmune--as opposed to dermatological--makes it sound more weighty. Just a suggestion.
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Shanna
That's a great point, my rheumatologist prescribed xeljanz for "RA symptoms" due to non-specific autoimmune disease. I've been on it since Christmas of 2014 and have had decent results. I've had AU for about 3 years and I now have sporadic hair growth on my scalp and just starting on my eyebrows. I also feel much better, I have gone from being relatively inactive to being able to walk/run 5-6 miles/day, and lift weights every 3rd day, it's really helped. I don't know how much more hair I will regrow, but if can get my head and eyebrows to grow back, I am happy. Also, no side effects noted.
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Shanna,
Do you know how your rheumatologist labeled your alopecia when he/she presented your case to your insurance company? Did your doctor label our disorder "autoimmune" without getting too specific? I saw the response from Joe however I really don't have any "RA Symptoms." Thanks
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My doctor presented my case very straightforwardly to my insurance company. He wrote a proposal for an attempt to treat my Alopecia Universalis with Xeljanz, and included the published findings of Dr. King's work. They approved it on those grounds.
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Thanks PA44totracon. Was Dr. Griffin able to help get your insurer to cover the pills?
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Don't know yet, we have not crossed that bridge. Will try to post something when I get it figured out. I should have the scrip tomorrow and then the fun begins with the insurance.
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Hi all! I've been reading this forum for quite some time, but now that I've officially started Xeljanz with Dr. King exactly one week ago, I thought I'd sign on and reply to the most popular message board! I, like several others, am using the copay card to pay for the first $8000 of the medication, and after three months I'll be taking the burden on myself. I am a 23 year old male and have had alopecia my whole life, although the universalis kicked in about 7 years ago. Sophomore year of high school I had the long curly hair that showed beautifully underneath the hockey and lacrosse helmets (very important style in high school) and by junior year my body was 100% hair-free. I tried every treatment you could think of but gave up after about 2 years with no signs of a comeback. I am very excited to be a part of the trial with Dr. King. I am currently taking the 2-pill a day dosage. Dr. King brought up a possible route for me as well that we might try after my first monthly visit in a couple of weeks. Since I am somewhat on the larger side (6'4", 225) Dr. King brought up the idea of supplementing my dosage with a heart burn medicine such as Prilosec, as he believes it may help allow the dosage to be absorbed at a slower rate by my body, somewhat extending each dosage without taking more pills. I would not recommend this for anyone on their own, but I will keep you all updated after my next visit whether I start this or not. If anyone has any questions about anything at all I would be more than happy to help out, whether it be about the medicine or lifestyle in generalt! I know living with alopecia can be tough, and with some experience living through high school and college completely bald I'd love to help anyone who'd like to talk. I've been through almost any situation possible that could be seen as awkward, depressing, or traumatizing for a young adult, and I have come up with some great ways to get through it all. I've thought about starting another forum for any help I can offer about living through the teeange and young adult years with alopecia, and if there is enough interest I'd gladly do so. Thanks!
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