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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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Funny! I just hope she (Sadele) is ok.
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Permalink Reply by sadele on
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Hi Xeljanzmiracle! I got your email, I haven't been on here for a few weeks... life had a turn in a distracting direction and I just didn't put time into going on this website. I did see Dr. King, it was a short appointment as I had to catch a flight back to Seattle. He is happy with my progress, in fact, he seemed very pleased. He gave me some injections along the hair line to see if that will fill in. I've been shaving my head but as of that last appointment, I'm going to let it grow and see how much I actually have. I took some pictures, which I will post. I have my lases coming in and my right eyebrow is filling in. I only have about 6 hairs on my left brow. He did mention the Ruxolitinib, and possibly going that route if things stayed as is. He said it's good to have it in my "back pocket". I'm scheduled to fly out and see him on July 1st so another appointment. He mentioned that it's more of a matter of "time" instead of "dosage", (increasing). I've been taking 20mg since Septmeber 2015. I started this whole xeljanz thing in July 2015. So this July will mark 1 year. He seemed to think that I am right on track and we will really evaluate if I want to switch over to Ruxolitinib at my 1 year mark. Let me know if you have any questions!
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Permalink Reply by James 2me on
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Hi Sadele I have been A U for 10 months I have been takeing 2.- five mgs a day of Xelljanz for 10 weeks lots of growth on Face but no signs yet on scalp I was going to see if I can move up to 3 pills a day my labs are ok beings that you have been takeing 20 mgs a day have YOURE labs been ok and do you feel any different physically. Thanks and good luck to you. James 2 me
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Hi James, I feel like I did before I began the medication. Everything I did prior I still continue to do now because there's been no change in my health. I ran the NY Marathon and I was a little concerned during my training that I would get "run down" but I felt good. That was the ultimate test for me to see if the medication was affecting me in any way. I haven't gained weight, I haven't gotten sick, my blood work is superb and my liver is normal.
I've been on 20mgs for 9 months now. I asked Dr. King about the negative effects and he said that people with RA take biologics for years and years and remain healthy. If there were a large amount of concern with the medication he wouldn't put people on it.
Thank you for your message and I'm happy to hear you are getting growth! I'm just waiting for the few little spots to fill in on my head and for the rest of my lashes to fill in. I know it will happen. I believe it will happen. I hope you do as well.
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Hey Sadele good to see you doing okay and had a positive outcome with Dr King. Can I just ask if you do want to switch to Ruxolitinib how would you be paying for that a that through insurance or just self bought as I've heard it is more expensive than xeljanz. And did you get to ask him why he was prescribing predisolone aslong side xeljanz ?
Am not sure if you did as I seen a lot of people asked you a lot of questions to ask but either way thanks for replying in advance.
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Thanks for responding Sadele great job doing the Marathon Congrats. I think being in physical shape plays an important role I ran for 40 years but had a couple of Back surgerys following an Accident keep up the good Work and be proud
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Wonderful read this thing: d Dr. King about the negative effects and he said that people with RA take biologics for years and years and remain healthy. If there were a large amount of concern with the medication he wouldn't put people on it.
GOOD NEWS !
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Hi thanks so much for your update!
Could you post pictures?aldo, about the ruxolitnib---would you add that to the Xeljanz, or would you go off xeljanz and switch to ruxolitnib?
I stated taking xeljanz last July and I grew all over white vellous hairs until March this year and then some began to fall out.ive gotten cortisone shots on scalp and eyebrows, and now I have eyebrows:.but it did not help so much for scalp. Thank you for sharing!
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Looool . I'm so worried about her , I've searched for her everywhere in social media.
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Permalink Reply by Jcortez05 on
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I'm on her IG she is fine she posted a picture like yesterday .. I didn't even know it was her Until the name sounded familiar
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