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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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Replies to This Discussion
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Permalink Reply by kimberj on
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Hello Jason. I have Alopecia Areata, although it seems I was closer to Universalis by definition. I have suffered with Alopecia bouts since the age of 8, generally just a spot here or there. In 2011, I noticed several spots on my scalp that continually worsened over the last couple of years. By January of 2014, the entire scalp area had lost original hair at some point and time. I also had lost all body hair, my eyebrows, and nasal hair. My eyelashes thinned but have held on. Lol. My hair is growing back all over my head and my eyebrows are starting to come in. My eyelashes are much thicker. I have not noticed any hair growth on my body as of yet.
I am not sure what the future plan is. Right now I am struggling with the insurance company to pay for this medication, it is very expensive (2800.00 monthly). My Dr has helped me with samples until it is authorized. I am very scared of losing my hair again!!! I despised wearing a wig. I am hoping that I will have taken enough to put the Alopecia in remission forever. I have decided to keep my hair short from now on because I think it will be emotionally easier for me if it does start to fall out again.
I will post updates and photos on my page to let everyone know the good and the bad.
Best Wishes!!!
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Permalink Reply by Starshine on
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Hi Kimberj. I am struggling with my insurance company too. Any advice on how to persuade them to cover it? It is so frustrating that there is finally something that can work and the insurance comoanies will not cover it. I hope your hair continues to come in and stays. My story is a lot like yours although I have not had it as long.
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Hi Starshine. The insurance companies are hesitant to pay for Xeljanz because 1. Cost 2. It isn't FDA approved for the treatment of Alopecia, yet. Although some conclusive evidence is present, it will probably take a couple of years before insurance companies will pay. Right now, my only hope of getting it covered is my actual diagnosis of Rheumatoid Arthritis. However, my insurance company would rather I used another drug, although I have experienced great overall improvement of my RA while taking Xeljanz. The hair growth has been an added bonus. Kind of a "two birds with one stone." I will keep everyone informed.
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This is all very encouraging for my little boys. Continued prayers and thoughts for everyone here. My 12 year old has lost everything and is a shell of his former self. I wonder if he will have to wait until he is 18 to get on a trial or they will have less invasive measures like creams in a few years.
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i've heard from my son's dermatologist at columbia that some more things were coming down the pike, but they will have to go thru trials first (18 and older) hopefully something will work! i went to the NAAF conference this year and there were tons of kids. maybe that is something you can look into for this june. i think that it is going to be in california, but i'm not sure.
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Permalink Reply by JeffreySF on
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Yes NAAF Conference is in CA next year. The next generation treatments they are working on are topical applications. Or so I'm told anyway...
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Is their any date on the Alopecia conference for CA next year ? thank you
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I'm 4 months in- it's working a little bit- but seemed to plateau around the 3 month mark. I've recently switched from 10mg-15mg a day- which is improving things slightly. I had full AU for the past 5 years, so maybe it would take longer for me. I'd love to know if anyone has had success with this drug where it kicked in a bit later? I'm going to try one more month and maybe switch over to ruxolitinib... Please let me know if anyone else has tried it and had delayed results- thanks!
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Hi Geoff,
Are you paying for it out of pocket or is insurance covering it? If so, how did you get insurance to pay for this cost? If it all grows back, do you plan on continuing to take it? Thanks for you help!!
Jason
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Hey Jason,
paying out of pocket at the moment- trying to set up a trial... insurance in canada will not cover a cent for off label use of a drug... Ill experiment with lowering dosage if it restores.... if i have to keep a high constant dose- Ill stop... If it were a few pills a month id consider staying on it
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Permalink Reply by Lindzzej on
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Geoff,
I've been doing a ton of research on Xeljanz because my dermatologist has prescribed it to me as well but my insurance company won't cover it (which im fighting) and it is around $2,300 a month it seems?
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