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 kevin on
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ask on WhatsApp if there are a few people who can help you out 4 boxes from your country while the delivery arrives dearly hoping that your order arrives you should have taken you before
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Oh Merry , so sorry you are going through this. Does anyone in North America have extra stock they can spare or have moved on to another treatment and can provide some to Merry? I would send you some from here but I think australia to Us would take longer then Beacon. If you have steroids taking them may slow the speed of loss until the package arrives. Beacon are still up and running and I am sure they will do their best to get it to you quickly. I am hopeful in times like these customs will back off on targeting medications as they have more pressing issues at hand. It’ll be okay Merry, this is temporary. Does your doctor have any samples he can give you? I literally feel like if we can get you a week or so of supply we can mitigate the shed to a degree. Keep us informed of your progress so we can try to mobilise support. Xx
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Hi Merry, have you tried to contact Zelsource Assistance. Even if you don't qualify, if you explain what happened, they may send you a bottle to get you through. Just a thought. Did you get a confirmation in writing from your insurance company that you were preauthorized until October?
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Thank you, Starshine! I am ordering from Beacon, but I will also contact Zelsource. Yes,my doctor and my pharmacy both got written notification that I was preauthorized through October. I plan to mention this to Zelsource.
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What insurance do you have? I am pretty sure that is illegal. They should be reported to the Insurance Commission. I have always found Zelsource to be helpful. They sent me several bottles while I was waiting to see if I met their criteria.
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I'm sorry, Nat, I don't know to message you. I think we have to be friends. Thank you for your concern.
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Merry, I can send you a couple boxes. Beacon doesn't ask for a prescription. The product from Beacon is good quality and helped many of us. I sent you a friend request.
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Thank you all for your concern. I appreciate it so much! I don't feel comfortable taking Xel from any of you because I can't be certain when or even if I will be able to repay you in kind. I wouldn't want to deprive anyone else in the future. It sounds like EMS will not be delivering until March 31and that is the delivery service that Beacon wants me to use. Of course, they said that it will be at least 2 weeks after they receive my payment anyway. My doctor is advising me not to order from India because she worries that it could be "contaminated". Beacon hasn't asked for a prescription yet, but it they do, my doctor won't provide it. I'm going to move ahead with my order and pray that the Coronavirus doesn't cause even more problems. Thanks again for your support. I will keep you updated.
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