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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 Nat on
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Hi TC,
I considered pulsing but the doc thinks that my AU needs something stronger. 60mg/day is the highest dose for my weight.
I had some minor side effects on Prednisone - stomach pain that resolved within the first week. I am hopping to be on Prednisone only for 2-3 months. Good luck to you!
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Hi Nat (and Singh),
firstly Nat- ask your doctor about betamethasone pulsing- it’s not popular in the western world as a steriod for most conditions but all studies seem to indicate of all the modern steriods it has the best rate of success for inducing growth and assisting co therapies (including Toficitinib). The general method is 5mgs a day two consecutive days a aweek to avoid side effects. I had no luck with prednisone before I took toficitinib hence I researched my butt off and found many articles re betamethasone pulsing having better results. Doc may say no but for me that was a huge game changer.
Singh, other then the steriods I used the following in my quest for hair, some I think helped sped it up BUT growing hair is soooooo slow.... esp, it seems, at the beginning. 4/5/6 months is a common wait timeframe for any growth- so if you have some result think about upping dose and adding betamethasone.. so my add-ons - most of which I eased up on or stopped after thick full regrowth was happening: minoxidil 5%, biotin 10000 mgs, vitamin d (had deficiency), good hair growth shampoo (I tried heaps don’t think they helped much but the ones with caffeine in them felt damn good!), allegra (antihistamine), and lumigan/latisse for lashes and brows. I stopped minoxidil as my scalp seemed to get pimples from it, but think it was a good aid. Afte rfull growth I dropped down on my vitamin doses to a few times a week except for Allegra (which helps with hay fever so kept on that), I still do latisse cause I like the extra length they give my lashes.
These add-ons will not grow the hair back but in my opinion (no proof outside of my experience) they did improve the quality of the regrowth.
here is an article on steriod pulsing for a read - a bit complex but helpful to a degree (remember the success rates are without toficitinib.
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Hi New Jack- that the burning stopped is great news. It can take a while to see the white vellus hairs so they might be getting ready to pop out. I am confident you will get it all back and not lose too much BUT I know very well how devestatingly hard this is mentally. The unknown that comes with this disease is the worst feeling. Knowing you respond to toficitinib try to have that mantra running through your head... like a bad haircut- “well it’ll grow back” - that’s hard for us as this is such a trauma for us but in your case I do think it’s 100% true that it’ll grow back and soon. Sending hugs x
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I've had AU going on 3 years. It was more than a year before I was able to see a specialist that would prescribe Xeljanz. I learned about this medication from this forum, not the doctors, so when I asked my dermatologist if he would prescribe it he referred me to UCSF where I was able to, finally, talk to someone who knew how to treat me. During the first year, I tried changing my diet, no sugar, alcohol, dairy or gluten. I did this diet for a full year without results. My Dermatologist loves to give Kenalog, so every 3 months I would get an injection, my hair would start to come in and at about 10 weeks, just before my next injection, it would all fall out. When I started Xeljanz, my UCSF Dr. helped get the first 3 months free. My insurance denied me twice and 10mg a day would cost me $4200.00 a month. I went to mexico and stocked up with 5 month supply (900.00 a month) which seemed like a deal but the traveling to get it and bringing it back through customs was stressful. Anyway, after taking 10 mg a day for almost 5 months and not a single hair, I decided to get proactive and increased the dose to 20mg and asked my UCSF Dr. to pulse some steroids. She hesitated but when I started to cry she agreed that I am old enough to make my own decisions and understand the consequences. I pulsed 300mg of prednisone, once a month for 3 months. It kicked off the growth and I was able to start buying the generic from overseas. Here are the results 11/4 12/4, 12/9, 1/20 20190120_120806.jpg 20181209_112535.jpg:20181104_145753.jpg20181204_132741.jpg
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Carlie- you look amazing! Such great progress- I’m so happy that the terrible 3 year experience of AU is coming to an end and now it will be just maintaining. I do think, even when we get all our hair back, and even without any relapses etc this trauma stays with us a bit. I see a psychologist about dealing with the anxiety that it has caused and I think that helps, but I don’t think I’ll ever be as carefree about life as before. On the flip side I have learned so much, meet kindred spirits on here and felt like I could offer positive advice and help to people that needed it which made me feel good too. One thing I have learned is to persist - if most of us hadn’t persisted in searching for a solution many of us would never have even heard about this med!
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Carlie: you have been through a lot. Where overseas do you get xeljanz? I’d like to look into it as it is prohibitively expensive....
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Carlie, your progress is great! It gives some hope to the rest of us.
My story is similar to yours. I found out about Xeljanz from this forum. None of the doctors I visited even mentioned it. I wish I started Xeljanz a year ago when I still had all my hair. Most doctors don't know much about Alopecia and don't care enough to do any research.
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Inggare, great progress. I was wondering though when you got your facial hair, lashes and brows back?
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Hi, I ordered mine now from Beacon. They will send you an order form that you need to fill out with a copy of your prescription and passport.
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