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 Xeljanzmiracle on
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Sorry Xeljanz2015, I missed Sp06's earlier confirmation that both of you, and Jags, had all received your Topical Xeljanz from the SAME compounding pharmacy in Philadelphia. I was thrown off by the differences in the price, but that probably reflects the shipping costs to different locations. Regardless of where we live tho, everyone interested in trying Topical Xeljanz should let our doctors know of its availability and ask them to prescribe it for us. I'm sure they are familiar with a compounding pharmacy close to where we live who can make it for us. Exciting times everyone! Since I'm on Pfizer's hardship program,and get Xeljanz for free, I'm going to find out if Sonexus Pharmacy they use in Texas is a compounding one. Who better to compound a topical version and makebit available than Pfizer? Individuals should be able to purchase it using their co-pay discount card as well. Wouldn't that be awesome? I sincerely feel that we current and FUTURE Xeljanz users are in a wonderful position to revolutionize the treatment for alopecia worldwide. Its a privilege to help others with this devastating disease that causes so much emotional pain and I want to thank everyone on this thread for being kind and supportive of me and each other.
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Permalink Reply by Starshine on
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Please let us know what you find out Xeljanzmiracle. I am also on the hardship program. I was wondering if their pharmacy could make the topical also and if the copay card would cover it. I have most of my hair back now, but there are a few areas that could use a little help, which is where the topical would be nice. Thanks for all your help.
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You are welcome Starshine. I called the Sonexus pharmacy Pfizer uses. Unfortunately, they are NOT a compounding pharmacy. Additionally, I found out they are not solely Pfizer's pharmacy either. As we continue on this journey, and the public clamor for Topical X gets louder, I'm sure that soon some super smart pharmaceutical company (and the FDA) will make it available to the general public hopefully generically. Everyone in the world knows someone who wants their hair back!
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Starshine, you know that the Hardship Program and Co-pay card are different programs right? Which one are you on? The Co-pay card is a limit of $12,000 of free oral Xeljanz PER YEAR, whereas the Hardship Program is unlimited free Xeljanz depending on your income.
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30 grams doesn't sound like much, but I think you really need very little for each application, even to cover the entire scalp. 30 grams may last you for entire month. The more important questions are whether it actually works, how fast, and how to proceed once hair starts growing.
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You need to be an American or live there to get the co-pay card, right?
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No Ujjain, you don't have to live in America to get the Pfizer co-pay card. You download it off the internet and call a number to activate it. You don't have to speak to anyone, just follow the prompts. Regardless of where you live you can pick up the Xeljanz at a pharmacy in the U.S. Lots of people have used CVS. If you want to get more than one month's supply at a time, private message Singh and he will tell you how he did it.
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I'm still a bit worried that there seems to be only 1 pharmacy that doesn't require a prescription which is not available by phone.
On http://www.ilacrehberi.com/v/xeljanz-5-mg-film-kapli-tablet-e5de/kt/ it says: "Reçete Durumu: Normal Reçeteli bir ilaçdır" which means "Prescription Status: Medicine with prescription".
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ujjain, stop worrying!, you don't need any prescription
when you go there, could you ask them if they also make xeljanz topical?, ill ask in switzerland but for sure itll be cheaper in turkey, also don't worry about the stock, they'll have enough, there's a pfizer factory in stanbul, they bring the pills directly from there, its impossible they won't have . As i said, stop worrying about this once you are there, you'll see its not a big deal
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Dr. Who, would you please post the Compounding Pharmacy info from Jags on page 12 of Stanford Trial, Part 2 onto this thread for everyone's convenience? Also, since you have been to Turkey recently and are familiar with where to go, stay, etc., could you also open a new discussion on that so people can have easier access to the info? We are so fortunate to have your LEGITIMATE knowledge, skills and abilities on AW!
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here it is, I hope Jags doesn't mind. This was originally posted by him to help us all.
Lars Brichta, PharmD PhDChemistry Rx
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thanks also for your words, i will create a new discussion and try to bring some light on how to get the topical xeljanz in switzerland/turkey and also ruxolitinib in europe. once i find out .
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THANK YOU, Dr. Who. Btw, Jags is a mother who has been able to get Topical Xeljanz for her son from that pharmacy. Its a 30 grm tube for approximately $330, depending on where you live. They ship it to you.
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