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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 Fenster on
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Hang in there.... I can imagine your frustration - Ugh, the thought of him finally get on this med and not getting the results others have experienced has to be heart wrenching. If the insurance company will some how cover this and my son begins the med's we aren't even going to speak about it's potential just in case it doesn't work. That way the letdown will be minimal. Billy started out with a patch or so in his hair missing, then part of his eyebrow's, which injections helped, and then boom it all went within a month and that was 2 years ago. If everyone here had to speculate is the success rate of about 70% seem right?
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Kasten, you really seem like a very inwardly strong person. I have male pattern baldness and am therefore on some of the other hair loss forums when people complain about the most minimal hair loss. Yet despite the fact that your hair loss is significant, you seem to have managed to succeed in spite of it, and I totally salute you for it. You are not one of these people without hair loss who say "oh, if I lost my hair, I'd just shave it off and move on". You practice what you preach and that's what makes your words meaningful. I am older than you but I wish I could be as strong as you. You say how your alopecia pushed you to put your nose to the grindstone and develop a strong body, as well as confidence. In contrast, my confidence has taken a drastic nosedive and alopecia has caused me such tragic emotional turmoil. Nonetheless, your words and story are nice to hear and you seem like a very cool person.
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As AA sufferers you would have a unique perspective on this question and Id love to hear your thoughts. My wife is concerned about me and how AA affects me but doesn't think that xeljanz is worth it. She doesn't care whether I have hair and has concerns about the cost and side effects. I could ramble on but bottom line is that it is hard to consider spending $25,000 on xeljanz when your spouse doesnt think it is needed/necessary or important. Thats my Friday rant. Thanks
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****PLEASE READ******
To all of you on Xeljanz I really feel i need to share the latest bump in my journey. I started the drug on April 20th and was on it with zero side effect from the drug. This last Monday I began having horrible abdominal pains...long story short...I spent the last 4 days in the hospital with a serious case of Diverticulitus which I was un-aware I had. (it's a condition of the colon where small pockets in the colon walls make you at a higher risk for infection there) The "Safety And Side Effects" tab on the Xeljanz website mentions Diverticulitus on it's website. I read this thoroughly but had no idea I had this or that I was at risk. Luckily I caught it in time and they didn't have to operate.
Just want everyone to know, these warnings are real. I firmly believe that if you are NOT at risk and you are well monitored this drug is a great thing for the Alopecia community. I'm also not going to let this get me down. There will be other drugs that will do the same / similar thing...several have already been discussed on this chain. I just might have to wait a little longer...but, i will have my health.
I'm still excited and thrilled for all of your progress...just be safe and read all of the warnings. Talk to your primary care physician to find out if any of these risk could apply to you before you find out like I did.
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Hi there, many of us share your pain. Those without alopecia just see us in a different light than we see ourselves. It is tough to understand how much we get affected by this disease more than just our physical appearance. My parents and girlfriend had the same concerns as your wife. I explained my thoughts and reasons as much as I possibly could to them. My parents were a little easier to convince as they had seen my struggles my whole life, but the girlfriend was none to pleased with the cost and potential side effects.
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Permalink Reply by Shanna on
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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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Permalink Reply by DJ88 on
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Hey Shanna,
i was wondering, After your doctor's proposal did they cover half of the xenjanz or most of it? Im looking for the easiest/cheapest method to approach this.
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They're covering all of it. I've been on it since mid-February; my current prescription is good until September. Not a penny out of pocket, so far.
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Permalink Reply by sadele on
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Hi Shanna,
Thank you for keeping us updated on your progress! I was put on oral steroids and responded pretty well to them, but they were tapered down and once I stopped the hair loss came back. I'm scheduled to meet with Dr. King in August, but in the meantime, I'm taking Methotextrate. My derm has had success in more than half of his patients with this so I opted to try it out.
How is your hair coming along? Did your growth start with white, soft fuzzy hairs or did your come out with dark pigment? I'm very happy for you and have been a prayer warrior that something will work for us! I really appreciate the pictures, it gives good encouragement!
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Hi there -
My name is Tara and I am in the Xeljanz trial at Stanford for Alopecia Universalis. Our trial is for 3 months. I have been on Xeljanz for 2.5 months, and after 3.5 years of not having one hair on my entire boday, I have significant growth on my head, eyelashes, eyebrows, etc. Significant in my eyes - maybe about 35% coverage from nothing. I have had no side effects to date - not even a cold. My problem is, I have a tough decision. My three months is almost up. I am considering staying on it for another 3 months. I CAN continue on the Xeljanz but 1) That will eliminate me from the Stanford trial because that study is specifically to research people on it for three months 2) Because I have used the copay card up, I will have to pay out of pocked for the xeljanz 3) I am concerned about that 1% of cancer on this medicine and did not want to be on it long.
I contacted Dr. King for his opinion, and he suggested I stay on it until I have signs of growth everywhere I want it. Thoughts? Suggestions?? WOuld love to talk more. Seeing this hair grow on me is truly amazing (and emotional).
Thanks!
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Hi Tara. I am in the exact same situation as you. Same trial, same timeline, similar response, and same concerns. It sounds like the only reason they limited the trial to 3 months was because of the co-pay card limitations. I think the Columbia trial provides the drug for 6 months. So now I am waiting to see if my insurance can possibly step in for another 3+ months. I don't have high hopes though and I am certainly not looking forward to paying out of pocket. Send me a private message if you want more details.
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