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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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AW: Other discussions on Xeljanz / Tofacitinib
https://alopeciaworld.com/main/search/search?q=Tofacitinib
Replies to This Discussion
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Permalink Reply by lu391 on
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a person who uses the drug XELJANZ that type of blood tests should be done and how often you have them?
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I got to see Dr.King for the first time today, and he is by far the BEST doctor i have ever met. There is literally no other doctor like him. Dermatology is generally an 8 to 10 minute thing where the doctor comes and goes very quickly, but dr.king spent a good hour or more with us and answered all of our questions and gave us very good advice. He spent a good amount of time explaining to us the situation and the options. I can tell he truly wants to help his pateints. The wait time is very long because he spends a long time with every one of his patients, but it was well worth the wait for me. He was also very optimistic, he said that it is almost guaranteed that within 5 years, there will be an FDA approved drug or drugs for alopecia patients, which is rly exciting. He also talked about how he is about to publish some papers and data in the coming months which will contribute majorly. As for right now, i plan on starting xeljanz asap, but i hv to wait until the insurance stuff gets settled, i rly hope they cover it. Hopefully ill be able to get my hands on some xeljanz by the end of the month. Dr. King also mentioned some stuff about topical tofacitinib. He said if the oral pill doesnt hv an effect that another option would be be to use the cream too while still taking xeljanz orally. I have my first follow up appointment 12 weeks after i start xeljanz. I hope everything goes well until then. Once again, dr.king was amazing.
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He sounds like a great Doctor to bad he's 3,000 miles away! Where can you get topical tofacitnib? 5 years for an FDA approved drug sounds like forever Was hoping for more like 2.
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Its about a 1600 mile trip for us, but its well worth it. He wasnt too specific on topical tofacitinib, but i think he said he found someone who could compound it into a cream from the pills. I didnt ask him too much abt it cuz i wanted to try out the pill first. Yeah, 5 years is quite a while, but he said "by 5 years" so it could be anytime before that too hopefully.
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5 years is too long! Im sick of waiting. They can approve viagra and bs like that. Someone needs to pay attention to us alopecians!
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Got a prescription for plaquenil to add with the 3 xeljanz a day I'm taking.Need an eye exam first Hope to start by Dec 1.Hope this does the trick because I'm kind of out of options if this doesn't work.Any one else taking this combo and seeing good results that xeljanz alone didn't work.
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Football fan,
I had not seen any results even with Plaquenil and 3 xeljanz per day, but since I started 4 per day without Plaquinel, I have vellus hair all over my face, about half my lashes and a few eyebrows. I also have patches of white hair coming in on my scalp, but it's still sparse and patchy. At least I'm seeing something. I go back to my doctor next Tuesday. I hope he can add something that will speed things up a bit. Everyone is different, and I seem to be one of the most resistant. Good Luck!
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Hi Merry how long have you been on xeljanz and all the different combos?Crazy that were responding so slow and the weird thing for me is that I'm not AU and still not responding the only place on my body with 0 hair is under my arms! Sparse everywhere else but never lost eyelashes or nose hair and have half my eyebrows.Hope it's just a matter of time and combinations for us.Keep me posted on what your Doctor says were diffinitely in the minority.
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Football Fan, I was on 2 xeljanz per day with Plaquenil for 6 months with no regrowth. Then I was on 3 per day with Plaqueni for 1 month. Then I was upped to 4 per day for the last 6 weeks. I started seeing regrowth about 3 weeks ago , but still very little on my scalp. I always get great regrowth with a high dose of cyclosporine, but every time I've tried it, it affects my kidneys at the dose I need for results. I wonder if my doctor will try xeljanz with a smaller dose of cyclosporine or something else.
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Permalink Reply by Xeljanzmiracle on
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Merry, CONGRATULATIONS!!! You are definitely on your way! Everyone's body IS different. This would probably be a super sensitive topic of discussion, but I wonder if our individual level of resistance to Xeljanz has something to do with use of "recreational" drugs currently or in the past. Or even use or abuse of prescription drugs now. I, for one had a VERY RAPID response to Xeljanz, but had no other drugs in my system. I never smoked cigarettes, only smoked marijuana intermittently in the 70's, had cocaine ONCE back in the early 80's, and nothing else EVER. I was given morphine and demerol after my C-section but only a 10 day supply. Alternatively, I wonder if smoking cigarettes has anything to do with a person's slow/delayed response to Xeljanz as well. I think I will start a discussion on this subject to see if anyone else thinks there might be a correlation. What is your opinion union?
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Never smoked cigarettes or took any recreational drugs!!Dont even have any friends that smoke cigarettes.Even my thyroid medication is natural (Armour thyroid).I have a super strong immune system and don't ever get sick!So I would put the recreational drug topic to rest doesn't apply here.
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Thank you, Xeljanzmiracle! No, I have never smoked or taken recreational drugs. I used to get tonsilitis often as a child, usually strep throat with a high fever. However, I have very seldom been sick as an adult, just an occassional cold or stomach bug. As an elementary teacher, I have been exposed to a lot of germs, but they don't make me sick now. I wonder if my childhood bouts of strep throat made my immune system stronger.
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