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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 Xeljanzmiracle on
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Well said Singh!
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Permalink Reply by Rach1992 on
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I don't drink or smoke, though so you can see how seriously I take my health. Also I agree conditions need to be treated but not by lowering the entire immune system. That's bad in and of itself. Also tuberculosis is probably worse than having a few drinks every weekend :P I've taken a holistic approach to my alopecia which started a year ago and have gone from AU to AA recently so I'm thinking what I'm doing is at least helpful. I can't wait for the cream, though. I'm excited about the pill form of Xeljanz in that it's a huge milestone towards a truly safe treatment.
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Permalink Reply by Joao Piva on
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This is a controlled treatment. Blood works every month and so on...
I decided to take the risck.
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Permalink Reply by cmdd20 on
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Speaking for myself, it’s a calculated risk. My thoughts before deciding to take Xeljanz:
- I’ve had spotty AA for ~25 years of my entire 29. For most of that time I was able to manage, but true to its unpredictable nature it became incredibly active 2 years ago (coinciding with X being used to treat AA). A year ago, taking X wasn’t really a consideration because my condition was still manageable (but barely). It wasn’t until about six months ago that I started to seriously consider X. Why? Because it had begun to impact my quality of life in a meaningful way. I love swimming but I avoided the ocean and pools all summer. I travel frequently for work – I avoid sleeping on overnight flights because laying down will mess up the product in my hair. I enjoy going away for long weekends with my friends – I avoid doing that altogether because fixing my (now buzzed) hair takes 30 minutes every morning. My choice of where to sit in a room or stand on the subway is usually based on where I think a person will least likely be situated behind me so they can’t study the back of my head. There are probably 100 more things I can give examples of that most of us have had to deal with, and I’ve had to deal with them more than a few times over the course of my AA, but now there looks to be a relatively effective and reliable treatment – so what’s the risk?
- I hate the idea of taking any medication. We look at what people were doing fifty years ago and say “what the hell were they thinking?” And people will look at us fifty years from now and probably say the same thing. Our bodies are extremely complex and we’ve a lot to learn about the way we work – so I’m naturally skeptical about putting things into my system. But for that same reason, I also think it’s unfair to give X the blanket characterization of lowering our ability to fight infection. By no means am I saying this is not a risk, but it has a very specific mechanism of action within our very complex immune system. So I look at this in two ways: X affects a very specific part of our immune system but doesn’t compromise it entirely OR since our immune system is so complex, isn’t it likely that the people involved with developing and approving this drug missed some of the risks that weren’t so obvious? I believe in the first part of that (though I’m no doctor) but definitely still concerned about the second part – so how do I get comfortable with it?
- Fortunately or unfortunately, some people who have demonstrated that X is an effective treatment for their AA also have demonstrated that when they stop taking X, their AA returns. This is unfortunate for obvious reasons but it actually makes me more comfortable from a health risk perspective. If I stop seeing the positive effects when I stop taking the medication then I think the same would go for the negative effects, or for whatever exposure there was while taking X (again, not a doctor). So as long as I’m on top of my health and bloodwork, and constantly monitoring my body during the time I am on X, then I can get comfortable with taking it, not really having to worry about something bad developing years down the road.
- Even so, I don’t want to be on medication for the rest of my life and I don’t intend to be. I believe (much like many others on this site) that these are relatively good times for the AA community and there’s a lot to look forward to. We’ve probably learned more about this condition in the last couple of years than the prior 25 and there are some very encouraging treatments or even cures on the horizon, and hopefully with a much lower risk profile. The way I see it, I’m using X as a bridge to get to the next treatment. Maybe that becomes available in 2016 or 2017, or maybe not for another five years. Either way, I want 30 to be a better year for me than 29 was. This is really no way to live. I’m fortunate to have a great family, a wonderful girlfriend, a lot of friends, and a good job – and still this ridiculous condition consumes me.
I’m not speaking for anyone else that takes X or telling anyone there’s a right and wrong decision. This was my thinking and why I’m okay taking it. And apologies for the short story, this obviously wasn't a simple decision.
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I agree with you 100% I just hate the way certain doctors always refer to there's nothing you can do just enjoy life or they convince individuals that a treatment is not worth the risk! When you have legalised tobbco and alcohol and other stuff yet that's ok because it produces vast amount of profit ! I agree I am using xeljanz as a bridge and hope more safe and reliable treatment will come along or cure.
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I mean, it has been studied and it has been shown to lower the ability to fight infection in the body, so that's not a matter of opinion, but a fact.
I see it has affected you so much and you have decided the risks are worth it, though. I say more power to you. In defense of my argument, taking a drug for a few years can cause problems down the road and that is definitely a risk you're taking as well. I am happy other people are happy about it and paying for it because that means it will spur a financial climate with Xeljanz that will be ready for the cream version which I am most excited about.
I mean, I'm a woman who lost all her hair to AU within a year's time two months before turning 22, having always prided myself on my hair my entire life. I am 23 now. It was thick, long, curly, and had beautifully long eyelashes to boot. I also don't have a boyfriend and AU happened to me right when I graduated college and moved to a city where I don't know anyone but a few family members (who are mostly supportive but also try to pressure me to wear wigs). I know how hard it is. Trust me. I just imagine how much worse it would be if I had tuberculosis AND alopecia.
Also, all this is not to say I won't change my mind in a few years if I see everyone doing well on it and no side effects. I'm open to my mind being changed but I definitely don't want to be the first guinea pig :(
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Didn't mean to suggest my opinion was that Xeljanz doesn't increase your risk to infection. It does. My only point is that I believe it's a manageable risk and is the reason I decided to take it.
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I was quite worried abt side effects as well before i started, but when i met dr.king, he assured us that its a very unlikely chance that id be affected by it majorly. As far as turburculosis is concerned, it shouldnt rly be a problem if you live in the US, but u should watch out when travelling to certain countries. Besides, u have to get a TB test done before starting the drug and you also have to have blood works done and sent to dr.king every month to make sure nothing bad is happening to your system overall. This made me more confident in taking xeljanz since im being monitored quite frequently. So the risk isnt too big in my opinion. Also, i plan on swithcing to a cream asap.
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Your opinion could sound like: Hey, don´t drive!!! You can crash your car and get hurt.
Calculated risk too, but you go foward.
Belive me. We are not doing it only for our selfes.
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Hi Rach1992, where did you hear you have to stop taking Xeljanz in your 50's or 60's? I know people that age who are taking it without any negative side effects.
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A study that used Xeljanz in Rheumatoid Arthritis patients. The risk just increases and if you do get a disease, the chance of getting rid of it safely also reduces. They recommend at 65 getting off Xeljanz or not starting it at that age in the study.
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I have the same concerns as you Rach1992 and just like cmdd20 I hate taking any medications and I feel very uneasy about putting this drug into my body, especially knowing that it's not a cure. But then I weigh potential side effects and steep cost against this thing called quality of life. Like you, I am also active, love traveling around the world, swimming, and just doing normal stuff. And while I'm still doing a lot of these things, I'd lie if I said that AA doesn't interfere with my life, my self-esteem, and relationships. So yeah, being normal is a big deal apparently. I think that if that topical cream pans out, it would truly be a game changer for us. Sure, you won't get your eyelashes or body hair back, but you also won't feel like you are compromising your health. Then again, who wants to wait 3-6 years until the cream shows up in your local pharmacy, while Xeljanz is within a reach now and your life is passing by, right?
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