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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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Your son has a great dad. I think you are doing the right thing by not sharing this news yet. At his age aggressive treatments are not recommended. However, this whole thing does continue to spring hope and that is something we all need to have fueled sometimes. I have 2 children myself and I am hoping that this disease skips a generation with the mindset that they will certainly have a cure should my children's children get it. Be there to support him and he will appreciate it in the long-run...even if it doesn't seem like it in the short-run. It really is beyond belief that they have not made more progress with this disease over the last 20 years. However, with the new information within the last 5 years and the speed of technology like it is, I am very optimistic for all of us over the next 10 years. I am hoping some floodgates have opened and new approaches are being taken now that so much more is known. You can also google "turn off autoimmune" and see some of the research they are starting with slicing the problematic protein and injecting it to desensitize the body to it...I think this could be real interesting. And thanks to the 2010 study, we know the problematic protein for alopecia!
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Permalink Reply by Arun B on
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Hey CWS, I'm glad you're seeing some great results! How long have you been on Xeljanz and also what has been your dosage through-out? Did it take a certain amount of months before you saw any regrowth? Thanks!
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You can look back at this thread for their progress updates. Looks like cws has been on the drug for 5 months now, starting with 5 mg for the first months and then 10 mg.
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Thank you for sharing your progress. I submitted my dna for research just over a year ago and am currently waiting for when trials will be coming to MD Anderson in Houston. I live in Dallas but unlike some folks cant afford to fly to destinations outside the state once a month for treatment, or i could have participated in the initial trials at Columbia. My researchers have been extremely supportive. I wish i knew when trials would be expanding here. Thank u for continuing to keep us updated. If u are comfortable with it, we would love to see pictures of your progress. If u feel too private for that certainly i understand. There is a lady on here who is participating in trials at Stanford too, and i am ecstatic that u all are open to sharing your experiences, if for no other reason than letting me know where the trials are. Since i have seen u and this woman posting, i am checking every day now to see if any new progress is happening. Hear that Pfizer? I've got money for u! ;)
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Hi Kat.. I'm in Dallas too! It would be awesome it it opened up in Houston.. Let me know if you ever hear anything and I will do the same!! What part of Dallas are you in?
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Can I ask who your dermatologist is and is he/she experienced with AA patients? I live in the area as well.
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Permalink Reply by roxy on
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It's awesome that this drug presents hope but is there a chance that it is approved it will become more affordable? As it is a person like me would never be able to afford it.
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https://www.xeljanz.com/co-pay-card
It seems that nobody is aware of Xeljanz copay program? I just started my Xeljanz teusday. I got 3 months worth for $0. My insurance didn't cover me, but Pfizer did. Nobody is aware of the Xeljanz copay program and people can be saving so much money with just a little research! I got 3 months of Xeljanz for $0.
Simply go on Xeljanz website and apply for a copay card. It processes in a few minutes and you will instantly have a downloadable PDF with a unique copay card if approved (they also send you it in the mail). Just like that. It covers up to $8000 a year. The only qualification was to have private insurance. I don't know why either. And even if you don't, you can still work things out with them. I called my pharmacy after learning my insurance didn't cover Xeljanz, I told them I have a copay card and read them the information over the phone and BOOM just like that 3 bottles (60 pills ea) of Xeljanz shipped to my door. $0.
Hope this helps some of you! And also for those of you like the OP are doing this for over a year, check these out they may help once your Xeljanz copay is all used up.
http://www.internetdrugcoupons.com/Xeljanz-Coupon
http://www.goodrx.com/xeljanz (Always fluctuates) I've seen as low as $2300.
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Permalink Reply by Lindzzej on
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Hi Tamer, Ive been aware of the copay program for Xeljanz, however, when I called Pfizer about this they said you dont qualify for it if it is for off label use? I desperately need to participate in that.
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I never told Xeljanz that I had it prescribed for off label use. I knew that would have instantly jeopardized my luck. Did you tell them this or did you download the copay online then ran it through your pharmacy and then Xeljanz denied you because they had discovered that it was prescribed for off label use?
Because if you simply told them you needed it for off-label over the phone before even downloading the copay card, then simply apply online and download the copay card. You didn't have to tell them that you had it prescribed for off label use and I am sure they haven't flagged your name.
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I asked my researchers at MD Anderson about this and they say while possible, it is potentially dangerous due to the fact that Xeljanz reduces platelet counts. So reading between the lines - if u attempt this and then cannot afford the medication after the fact, it seems it could be unsafe for your body to get used to the drug and then not be able to have it anymore. At the very least, it's very important to be under physician supervision for monitoring of your bodily functions.
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