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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 cws on
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Hello everyone,
I thought I would give an update on how things are going for me. So far, all good news.
- 100% of my eyebrows
-100% of my mustache
- 100% of eyelashes
-90% of my beard (facial beard, my neck still has about 70% to grow)
- The large majority of hair on my head is now terminal (I have a couple of resistant spots that are slowly showing improvement). 75% of my head is terminal hair.
-30% of arm and chest hair
-70% groin area
- 0% of leg hair (weird huh?)
I have been on the drug roughly 9 months now. The first month was half dosage. The remaining eight have been on the recommended dosage of 10mg per day (2 pills per day).
No side effects thus far...although lately I have had some acne, but can't yet confirm this as side effect.
I plan on staying at this dosage until everything has grown in. Once all is in, I will go to half dosage and monitor from there. At that time, I am hoping the results of the ongoing studies will give us some more insight on maintenance. Once/ if Baricitinib is FDA approved I will likely jump horses over to it (due to the safety profile).
Exciting stuff is happening...I am sure there will be more drugs to come. Hopefully something for everyone.
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Awesome news cws!! Thanks for the update. I just started yesterday...looking forward to great results. Feel the same about Baricitinib...AND it's cost.
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Permalink Reply by Giusep on
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Wow CWS that's is great I am so happy for you. My Fiancés hair is growing back like wild fire. Each day more and more hairs appear. She is on her 4th month at 10mgs a day.
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This is amazing cws! Sounds like a good plan on switching to maintenance. Hope this pans out for you and all of us.
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Has anyone managed to get their insurance to cover Xeljanz, if not fully, then partially? The copay card is a good starting point, but it will eventually run out. How are you folks managing without insurance? Any loopholes allowing use of another copay card? For people on trials, what are your options once the trial ends?
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I was wondering this also. My insurance Carefirst, does pay half, but I am concerned about what to do when the copay runs out. I do not know if you are allowed to use more than one card, but I don't think so. It does renew at the beginning of each year until they stop the program.
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Thanks for bringing up the payment, James. I'm trying to figure out any option to make this cheaper once I am off the copay card as well. I don't think there are any loopholes with the copay card and I believe you have to wait a full calendar year from when you first used it (so you can't just get another one in Jan for example). I think the options are trying to get samples from your dermatologist via a rheumatologist friend, using a coupon (someone posted an rx coupon earlier in this thread for a place where you can print a coupon for 50% off one refill but I am not sure if it will work), and trying to go through insurance which seems like an uphill battle.
Starshine- how did you get your insurance to cover half of it? Are you using it strictly for alopecia or do you have RA as well? I am really surprised they are even covering any of it but that is awesome they did!
Does anyone else have any advice for how to get insurance to help cover it? Any success with insurance companies? If so which one and what did you do?
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Julie, my dermatologist wrote a letter to my ins company and sent photos along with a list of all the prior treatments I tried, which all failed. He told them it was for AU, I do not have RA. They covered it, no problem, according to the coverage I have which pays for half of specialty drugs.
Does anyone know more about other discounts or coupons available for Xeljanz besides the copay card?
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Permalink Reply by DJ88 on
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Hey starshine,
I was wondering , may I ask(PM) you somethings about Xenjanz and getting it covered?
I want to try this but im hesitant. I dont want to get it using the co-pay only to have it work and then stripped away from me.
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