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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 Carlie on
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My Dr. stayed with Dr. King's program of 300 mg of prednisone once a month for 3 months. I noticed a difference the first week. Prednisone will cause weight gain but that was the only side effect I noticed other than fewer aches and pains.
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My order from Beacon arrived today, 20 boxes. It took about a week.
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Tofacinix.jpg, 88 KB
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Permalink Reply by NicoleT on
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Amazing!
Ive only ever ordered up to 8-10 boxes at a time.
Good to know this got through! yay!
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How did you find a lab to test the Tofacinix from Bangladesh. I am from Canada and the costs of Xeljanz would bankrupt me. Thanks for you support and all the info you have given us.
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Hey MIke!
I just google around for drug testing labs and found one in Cali.
Mine lab only tested for the ingredient but not the quantity.
Kevin recently posted lab results that showed the quantity at 4.2 per pill on the particular pill he had tested.
So basically the work has been done for you!
:)
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Hi Nicole,
Have you continued on the same dose from Beacon? How long have you been taking the Beacon formula. It's so inexpensive I will just take an extra pill if need be, Every batch can be different, so it is hard to know exactly what we're getting. I take 20 mg a day. I jumped from 10 to 20 and started getting great results but 15 might have been enough. I didn't see any results from 10 mg for 5 months.
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Hey Carlie!
On March 1 i started xeljanz name brand 10mg daily
June 1 I switched from name brand to beacon, still 10mg daily
Aug 10 i increased to 15mg daily beacon.
Based on Kevin's current lab results, this means I'm probably ACTUALLY only getting about 13mg per day. But this is sufficient.
I'm planning to talk to my doc about a possible weaning down of dose in the New Year. Keep you guys posted what he says
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Thank you for the speedy reply. Also, that was only one pill and each batch may vary a little. Who knows, if you had Xeljanz tested it might vary too! You never know what the companies might do for the big bucks.
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hello Carlie
hello all
Ccould you tell me how is it cost your order from Beacon (20 boxes)?
I am from Greece and i am thinking to try to these exciting news.
I am very happy for all of you about your positive progress!!!
However i am wondering about the permanent results after this long treatmeant ??
thanks a lot
Dimitris
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Hi Dimitris,
It cost me 350 USD for 20 boxes or 600 tablets. I think it was 35.00 for shipping. I don't think we know the the repercussions from years of use. At this time I feel healthier but that maybe a result of taking supplements and eating better, plus not drinking as much
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Had anyone used Xeljanz for progressing AA? I’ve only been using for a week so I know it’s way too early. Just wondering if the medicine starts working immediately and stops progressing aa immediately or if it takes awhile for it to start working in our body.
thanks
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Hi Brock,
as a lot of us start the med as AU it’s hard to know the extent it can help with progressing AA. In those of us who start from baseline - it often needs 3/4 months to work, sometimes more - so I guess it depends how fast it is progressing. If it comes out within a week- maybe not... but if you are only noticing a slow increase of patch size then it could be quicker I suppose. In my case I got a patch and it progressed to Au over about 4/5 months. I was unable to get onto the meds until it was all gone about 6 months after it started (so totally Au for one month or so before getting hold of the meds) Some people do respond almost immediately. For me, my AU was triggered by illnesses and/or the use of antibiotics - so I think my hair was pretty much doomed. If you look at hair cycles - often a hair that falls out actually has been sitting ready to fall out for a bit, so when it is noticeable sometimes tracking back 3 or so months before is when the trauma or trigger happened... what xeljanz does do, however, in circa 80% of us, is regrow the hair - it can’t save hair that is already “dead”... I know that’s kind of confusing but it’s the best that I can answer to my knowledge.... I hope it does stop the progression for you, if not, then hold onto the high response rate in regrowing the hair and try to be kind to yourself in the mean time...
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