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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 Giusep on
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Hey Traci, can you please accept my request to add you, I have a few questions to ask you. Thanks
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Permalink Reply by DJ88 on
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Hello Traci,
May I message you about that insurance thing? Im looking to get my own insurance soon and I'll was looking for one that would cover this. I have a few questions as well. Is it ok if i asked you about it?
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Permalink Reply by JHen on
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Hi Traci, I also just began taking Xeljanz. I have a few questions for you as my doctors are working with my insurance right now. I have sent you a friend request.
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Glad I found this board. My son Billy suffers from alopecia totalis and he is 12. We met with the wonderful Dr King back in August. I was curious how the trials were going so reading this was encouraging. Is anyone here going to this ?
http://www.naaf.org/site/DocServer/2014_11_16_Summit_Program_v01.pd...
Basically with my son's age being so young, they won't be allowing him on any trials in the near future because of all the unknowns. One question I have at this point , is what trials are showing more promise, Columbia University or Dr Kings?
Have a great day everyone.
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i had taken my son to columbia. they won't do any trials on minors.
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Permalink Reply by kimberj on
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I have been on Xeljanz for two months now. I was prescribed the drug in addition to Plaquenil for Rheumatoid Arthritis. I began seeing small, slow growth while just taking the Plaquenil but the growth almost doubled in two months once the Xeljanz was added to my daily meds. In the past two weeks, I have noticed black roots throughout my scalp. This week a few dark eyebrows have began to come in. Along with the added benefits of the hair regrowth, my RA is much better. I have less inflammation, very little pain, and my range of motion/mobility is almost back to normal. So far I have not experienced any noticeable side effects from either med and all routine blood work has been normal. I am posting new pics of my hair growth.
My dosage is 200mg twice daily of Plaquenil and 5 mg twice daily of Xeljanz.
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that's great!!!!
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Hi Kimberj,
Great news. What kind of alopecia did you have? How long did you have it? Is it growing back all over?
Also, what is the plan once you achieve full hair growth? Do you continue on the meds or do the docs believe your hair will remain after it is all back? I am nervous about side effects or losing my hair once stopping the medication.
Insight into this would be very helpful. Thank you!
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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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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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