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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 Rach1992 on
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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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Permalink Reply by gowml on
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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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You always have the option of taking xeljanz in pill form and then switching over to the cream when its available. Also, Dr.King told me that the cream would work just fine for growing eyelashes as well.
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What if the cream gets into your eyes accidentally? Sp06, did you ask Dr. King if one can get a prescription to have a compounding pharmacy turn Xeljanz pills into a cream? I would think many people would want to pursue this option instead of taking it orally.
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Yes! Please let me know if you hear anything about getting a compounding pharmacy to create a cream form. I would love to try it as a cream. WAY less risk since it's only a local suppressant!
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Lol i asked dr.king the same thing, he said its not a big deal getting a little bit of cream in your eye. I dont know the details of how to obtain the cream because i wanted to do the oral treatment first, but my plan is to switch to a cream. Dr king told me that if my hair grew back with the pills, that i could try maintaining it with the cream. Case 2 is that the pills dont work for me, if this happens he told me he would give me the cream to use in addition to the pills. If possible, you should try to see dr.king, its well worth it. And im sure he'd have more information about the cream than i do.
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So he says it's okay to go to a compounding pharmacist now to crush the pills into cream form???
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I personally live a very full and happy life. I'm actually a swimmer and I just go to the pool bald every time. I'm bald and that really sucked when my hair first fell out but I went to a therapist for a while when it did so I could mourn the loss of the hair properly and move on with my life. Although it's a lifelong thing, I'm doing really well now and I honestly don't think having my hair back would affect my quality of life much. Only real benefits I see for myself are:
1. More choice of the shallower guys when dating (not a great benefit- plenty of shallow guys don't care about my not having hair anyway and I'm not interested in them regardless)
2. I won't have to wear wigs for meetings.
While my risks would be:
1. Traveling would be very dangerous (I'm going to backpack through Europe for a month in May, then plan to backpack through Australia the next year, Iceland the year after and I hope to see every country in my lifetime)
2. There's a chance I could get one or more of many different diseases.
I completely understand your wish to get your hair back (I'd like mine back as well).. I just think it's too risky for me
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Permalink Reply by Xeljanzmiracle on
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Rach1992, if I was traveling all over the world as you are doing I WOULD DEFINITELY have concerns about Xeljanz and my immune system. You are more at risk from infections and germs your body has never been exposed to before. You are doing the right thing FOR YOU. Everyone on here has a different background, different medical history, etc. I personally am a good candidate because, for my age, I had NO health issues at all, except for an allergy to gluten (a protein in wheat, rye or barley). I have so many friends 15-20 years younger than me, that have fibromyalgia, diabetes, high blood pressure, high cholesterol, heart problems, arthritis, you name it! So even tho I am older, I'm blessed to have better than average health for someone in my age bracket. I also never smoked cigarettes and was careful with my diet for most of my life. So the decisions I made regarding my health, in my teen age years and my 20's, helped me to be healthier now. Therefore, as others have pointed out, we must PERSONALLY DECIDE for ourselves, and this is extremely important as well: Respect the right of others to make their own medical decisions. In the medical field this right is called "Informed Consent." You have read (or been informed orally) of the risks of a certain course of medical treatment, and we as patients, make the choice to proceed. Of course with minors (under the age of 18 in the U.S.), it is different. The parent/guardian usually decides. But even then, in some cases, minors have been able to make their own medical decisions after a Judge has ascertained their level of comprehension of the risks, etc.) For example, because of their religious beliefs and what the Bible states about "abstaining from blood", some minors have decided not to take blood transfusions, and the courts and Judges have upheld that decision. How much more so then, does an adult have the right to decide upon or reject, a certain course of treatment?
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Yeah, I'm not saying nobody else should not take the drug, I just am not sure people know the risks. To me it's an obvious "no" which is why I made the topic. I'm not sure what other people are seeing that I'm not.. or on the other hand what I'm seeing that others are not. I like these discussions... especially with the alopecia community because I don't know alopecians in person. This makes me feel connected with other baldies ^_^
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Less hydrodynamic drag while swimming - I suppose we have that going for us.
People have been naturally conditioned to prefer others with hair, and while male pattern baldness is typically perceived as natural, AA is simply a different animal. It has more to do with "unhealthy" appearance than being aesthetically pleasing. I admit, I prefer women with natural hair and I am almost certainly not a shallow person. This is just the way things are in the world :(.
And btw, you are unlikely to catch any nasty bugs while backpacking in Europe, Iceland, or Australia. The real danger is being stuck on an plane in tight quarters for half a day.
You are young and pretty and content with your life, so maybe you can wait it out until a safer treatment becomes available. But I am guessing the vast majority of people on here are not happy with their life (hence "AlopeciaDestroyedMyLife") and are are desperate for a cure and a chance to get on with their life. I suppose that's what it ultimately comes down to - whether or not you made peace with your loss of hair and are content with your new life.
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