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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 Anna on
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Thank you Singh. I actually did read the beginning of this discussion and had the impression ADML responded pretty quickly, but I will go back and reread!
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Anna - are you certain you are not just a slow responder? I know it is so tough. Are you able to go up in dose or try the steriods? Are you self funding? I feel for you hun. There was study my immunologist translated for me (medical lingo) in which a guy got his first hair at 8 months on increasing doses etc, and at 18 months (end of trial) he had 80% back. I’d really hate for you to give up to soon but know self funding is very hard....
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Hi Frida,
Thanks for your note. It has been 5 months, the last few months at 30 mgs, and I do not have anything - not even vellus hair. I am not giving up - I see my doctor again in two weeks, and I am pretty sure he will put me up to 60 mgs. I am very lucky that my insurance company agreed to cover 80%, though I am not sure if they will cover the increasing dosages - will have to see. At the beginning when I was not covered (I had to appeal a few times) my sister raised some money for me to buy the drugs - that money has long since been spent :). I send my doc a note about steroids - he doesn't seem super keen but I may argue with him a bit as so many on this forum seem to have done it and had results.
So at the moment I am certainly a non-responder - I literally have not even a single vellus hair on my entire body after 5 months on Xeljanz. But I am not giving up just yet.
Thanks for your reply :)
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Anna I’m at work at the mo but when I get off I will pm you a study to take to your doctor to back up your request for steriod pulsing. So check your msgs in 7 hours or so- it’s a PDF as there is a paywall on the article but it’s what I took my doc when we started pulsing and he made sense of it.
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Frida, would you message me the same article. When I asked my derm about it he looked at me like I was from Mars.
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Will do! Circled the bit about steriod pulsing. Would put it up here but don’t want to breach copyright or anything!
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Hi Anna, I've been AU for almost 2 years. It came on suddenly and within 2 weeks all of my hair was gone. In the beginning I saw my regular primary care dr and a dermatologist who gave me a steroid shot in my hip. I grew a little peach fuzz but as the shot wore off my fuzz fell out. It seemed there was very little anyone could do aside from topical creams and the shots. It was on this forum that I learned so much more. I saw a nutritionist who put me on a really strict diet and swore my hair would grow if I would be patient and stay with it. Well after a year of only vegetable, meat and water at room temperature, I threw in the towel because it wasn't working. On top of the diet I took a zillion supplements. After a year of waiting to see if diet and shots would work, I saw a functional dr. who prescribed LDN, she also checked all my hormone levels and prescribed a number of supplements and bio-identical hormones. When I asked my dermatologist about xeljanz he referred me to a specialist at UCSF. It took a couple of months before I could get an appointment but when I finally saw the specialist I knew I was in the right place. She immediately got me my first 3 months of xeljanz through pfizer. The first 2 months I really wasn't seeing any improvement so I got another Kenalog shot to see if that would help and sure enough my hair started coming in. I worry that as soon as the shot starts to wear off my hair will go again. I can only have the shots every 3 months. My insurance declined me so my dr. is helping me with an appeal. Meanwhile I am going to Mexico City to stock up. It's still very expensive, but a heck of a lot better than here. It looks like I will be paying $900.00 for 56 tablets.
If I were you I would ask my dr. about pulsing steroids or a kenalog injection and see if that kick starts the process. I look in the magnifying mirror several times a day, it's like watching paint dry at first but soon you'll see the peach fuzz and hopefully those will grow stronger. Good luck and keep us posted.
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Hi Carlie,
Thanks for your reply. I will certainly ask my doc again about Kenalog injection - did you have side effects from the shot? My doc doesn't seem keen on the idea, but I can push it with him. I see what you mean about worrying it will fall out after the shots stop - early on in this whole mess I had some injections in my eyebrows, and I got about 5 hairs in each brow - but when I stopped the injections (5 hairs not worth it!) they fell out. I hope in your case the Kenalog just jump started the Xeljanz and that it is not the Xeljanz working its magic.
I too peer into the mirror 78 times a day, and force my kids to look at my head and brows with a flashlight!
What dosage of Xeljanz are you taking Carlie?
Thanks,
Anna
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I'm taking 10mg a day. Doctors. are so different, my derm wanted to give me the shots and before I started the xeljanz decided I didn't want to have the shots. I told him I couldn't take the shots forever and it seemed like my hair falls out when I stop them, he said he has patients that have getting injections for 15 years, as if it's perfectly alright. After reading so many posts from members that do use the steroids to get Xeljanz working faster, I decided to try them again. My regular derm didn't even know what xeljanz is while the UCSF dr. knew what it was and how to help me get it. She also wrote a prescription for me to take to Mexico. It's most important to have physician that understands what we are up against and how devastating this disease is. But your doctor has upped your dose to 30 so he or she is trying within the scope of their knowledge.
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Anna, to answer your question about the kenalog shot, I feel better with it. It's an anti-inflammatory so naturally all my still arthritic joints feel better. I also feel like I lose a little weight with them.
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