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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 Jcortez05 on
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I had a biopsy and was AA the follicle wasn't dead or whatever it's called but I had lost my hair on my head and on most parts of my body
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Permalink Reply by singh on
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Thanks for your reply your growth is amazing ! Gives us all hope. Thank you jcortez
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Permalink Reply by roxy on
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Hi There. How can we go about purchasing Turkish Xeljanz. is it cheaper and what does it cost?
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Permalink Reply by Xeljanzmiracle on
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Roxy, you have to go to Turkey in person to purchase it. The name, phone number and address for a pharmacy in Instanbul, Turkey others have used is on page 200 of this thread. The Xeljanz is approximately $600 for 56 pills and you DO NOT need a prescription. If you read the surrounding pages the woman who went (Aurora Sophie) also posted the name of hotel she stayed at.
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Hey everyone.
Need some advice, and opinions thoughts, you name it. ( First a little back story )
My son is 14 and has been AU for 3 years. He went AU pretty quickly and has been AU since. He wears a skully type cap 24-7. I have very rarely seen him without it. FYI We've seen Dr King and have another appointment in 3 weeks to most likely get on Xeljanz. So the last couple of weeks I've noticed while driving when the light is super bright my son has a rogue super finite hair growing in his mustache area and maybe one or two in between his eyes. Maybe 3 tops and again they are super finite. Then out the blue last night with rough housing with his 5 year old brother his cap came off accidentally. His little brother whispered to me later that night in the middle of his head he had some hairs growing. I couldn't get a good grip on exactly how much was there, as my son is 5.
So while I am a little excited, I don't want to get overly hyped. Am I wrong to think that this is a good sign and the medication will have a higher percentage of working? I'm trying to guard myself from getting overly optimistic.
Any insight will help. Thanks in advance.
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Fenster, maybe your son is experiencing spontaneous remission. Maybe he won't need the Xeljanz at all. We could all speculate, but since your son will be seeing Dr. King soon, he will be the best person to tell you what he thinks is going on and whether your son should still start Xeljanz. Maybe your son will have even more regrowth by the time of his visit. Is your son so shy/sensitive that he won't remove his hat and let you see his growth for yourself?
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Unfortunately he is super shy. He doesn't want to talk about it whatsoever. It's heartbreaking but I've tried everything to open him up. I'm taking him to the Alopecia event in Vegas in July so he can meet Kevin Bull, the American Ninja Warrior who has full AU.
I've never heard the term spontaneous remission.
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Fenster, spontaneous remission means someone is suddenly cured. Just like our hair suddenly started falling out, it can also suddenly grow back without any treatment whatsoever.
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Hey Fenster I agree with xeljanzmiracle your son because he so young might be experiencing remission! It's a good chance because he's had alopevia 3 years where a lot of others including myself have had it a lot longer. I think if you read Susans discussion you will see you had a onset of sudden remission. If dr King thinks he is then just let it grow without xeljanz interfering. Because it's a possibility that's will be sure treatment if not cure for Alopecia in the next coming years. For example look up a drug called Ctp-543 it's being tested for alopevia and they have already started phase 1 and phase 2 hopefully earlier next year. So this could come out in the next mybe 4 years.
Singh.
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Does anyone know what the time frame that type of remission looks like or is it different for anyone. Obviously Dr. King will have the final say. I wonder does the hair come first , then the eye brows and lashes or vice versa. Trying not to get overly amped up. Thanks for all the input.
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Fenster. There is no set pattern to hair regrowth. People are different, genetics are different. Just be happy that there's hope for your son, thru remission or with Xeljanz. Please let us know what Dr. King says. Thanks
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