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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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I'm so sorry Football Fan. Are you sure your alopecia is autoimmune related? I can understand your frustration. It's kind of you to be happy and supportive of us although you haven't experienced positive results.
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Permalink Reply by Starshine on
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Hi Football Fan. How long have you been on 3 a day now with the Plaquenil? Have you seen anything at all anywhere?
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Hi Starshine on 3 a day since Oct 1 and added Plaquenil on December 1 no new growth yet.The last time I had a 2 year growth spurt (about 70 percent scalp hair not quite enough to go without a wig before it started falling out again)I went to Roatan on vacation and took an anti malaria pill for a month and about a month later my hair started growing.Plaquenil is used also for an anti malaria so keeping my fingers crossed.
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Hi Gowml, the abstract from the Yale and Stanford trials and their interim results were already published. Go back to p. 140 of this discussion. EJG posted the results. Bottom line, like you predicted is that Xeljanz is "safe and efficacious." But no, it will not work for everyone, and some people will experience adverse side effects like they do to any drug, even aspirin. Pfizer does have a hardship program and co-host cards wherein many can get it totally free or at a significant reduction. As for the cream, it will be applied to the scalp, not the hair. We're all hoping for the best!
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I am aware of interim results. I was referring to the final publication which is currently under review. Yes, I know it has to be applied to the scalp, but once and if the hair starts growing, it would be difficult to do.
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I meant to say Pfizer has co-PAY cards that you can print off the internet that will give you $8,000 worth of Xeljanz each calendar year for free. With the Hardship Program, depending on your income, there is NO YEARLY LIMIT. They will give it to you free and ship it to you free by 2 day Fed Ex. That is the program I am on. As far as a topical form of Xeljanz, I guess it will absorb into your scalp like Rogaine does. Or maybe we will use the cream and be able to take a lower disease orally at the same time. That remains to be seen. We have SO MANY OPTIONS coming up with other JAK inhibitors as well. Exciting times!
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Who reported sides effect ?? Have you true news or are you thinking ???
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No of course it's not and it won't be for everyone. It is also extremely expensive right now so many people aren't even able to try it. But I do have faith that more treatments for alopecia are coming and I think the next few years will be big for all of us
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One thing I noticed Katiegirl in re-reading some older posts is that you were able to start taking 3 pills a day (15 mgs) starting your second month on Xeljanz. I wasn't able to up my dosage until month 4, and like you I have noticed a HUGE DIFFERENCE in my rate of growth and coverage of my scalp. I also added Biotin, which seems to have helped too. As a black woman my hair also grows out instead of down, so I usually gel it to make it lay down. But growth is growth and I feel blessed to have any at all after 6 years!
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Its awesome to see how many of you guys had such amazing results with Xeljanz. Im so happy for you guys! How can you say that Xeljanz isnt a miracle. The fact that it gives someone hope is in itself the greatest miracle possible. Before Xeljanz, there was nothing i could do to try growing back my hair and i felt so helpless and depressed, but now that i recently started, i feel like im actually doing something about it and that theres a chance it might grow back. Im a guy and i wear a wig to high chool everyday, it can get to be a pain in the neck to set it up every morning. I started xeljanz about a week ago and im hoping it will be a miracle for me too, in many ways, it already has been a miracle for me.
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