Alopecia World
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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 katiegirl on
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I did it just for about a month and a half. Couldn't afford it or else I would've stayed longer.I was fortunate that I grew enough on my head during that time to go back down to two. Very happy to hear you are seeing good growth I remember you saying you felt discouraged. Hope all continues to go well for you :)
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We're in the slower response Club.Went to the dermatologist today got cortisone shots in one area of my scalp to see if that will jump start anything.The end of the month I go see my Endocrinlogist who prescribed the xeljanz and see about upping to 3 pills a day.Applied for the hardship card keeping my fingers crossed.A little interesting news my Derm met with Pfizer the end of March and they are trying to get Xeljanz approved for psoriasis he talked to them at length about getting it approved for AA since we have no drug out there and the other disease has several.Also had a patient who made xeljanz into a topical cream and it grew hair.I got excited till I heard the cost over 3,000.for a tube that doesn't last a month.Lets keep posting are progress hopefully we will all go grow are hair back even us slow ones
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I just called a Vancouver BC / Canadian Costco...60 pills / 5mg of Xeljanz is 1,432 dollars. They said you needed a Canadian Doctor to write the prescription. Does any one know a Vancouver BC doctor that can assist?
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I went to my dermatologist today he did cortisone shots and wants to start me on Prednisone 20mg for one week then 10mg for a while. I hate Prednisone I had some progress with the shots and prednisone a while ago but then it fell out. He thinks the Zeljanz Prednisone and shots could boost my immune system. I hate the Prednisone it makes me a monster and I gain 10lbs. I asked him about taking 3 pills a day. He said I have only been on the 10mg for a month and half and he doesn't think I have been on it long enough to see results. Hopefully the shots will speed us out of the Slow response club! Good luck I will keep you posted!!
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Permalink Reply by AlopeciaDestroyedMyLife on
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I wouldn't touch Prednisolone with a barge pole after what happened to me.
Mixing Xeljanz with Prednisolone can be a potentially lethal mix. I would seriously consider seeing another Dermatologist if he/she thinks these drugs will boost the immune system when they are all Immunosuppressants.
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I do not want to start it. When I took Prednisone and shots before the Zeljanz it started growth but not enough. Why is it a harmful mix? and what happened to you? If you don't mind me asking??
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Permalink Reply by Xeljanzmiracle on
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CONGRATULATIONS TO YOU Starshine on being enrolled in the hardship program and getting your Xeljanz for free!!! When did you first apply?
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I applied about one and a half months ago. It took awhile and I had to provide paystubs for myself and my husband. I was honestly surprised as my insurance does cover half, but the $8,000. Copay is exhausted which left a hefty copay. Do you have to reapply each year and do you know if it is good for the whole year? The lady I talked to said it was good for the entire year in which you applied.
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They did mention that I would have to reapply for next year. They said they would be sending me forms for that in November. I'm only on my second month and going to hope that I will continue to be enrolled long enough for my immune system to "readjust itself". I will say this: I think being allergic to wheat (gluten) has something to do with my immune system wearing down. I'm trying to be "gluten free" but it's hard to get and stay on track.
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Here are this months photos,
The back has been included this time as well.
I have been taking Xeljanz for 1 year and 2 months.
With over 132700 views and over 1100 replies , I would like to thank all of you for your support.
You guys have been my rock in this slow process and I hope I've done all I can to inspire you all to not give up.
Every single one of you deserves your hair back. You deserve to live your life to it fullest and to not have to hide away and live a secluded , lonely existence like I was
This has been a very emotional experience which is still ongoing. I will continue to take these tablets until I reach my life dream, regardless of how many years it takes and how many savings I need to spend.
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BEAUTIFUL!!! And thank you SO MUCH!!! Valeri
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