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 Frida Rupert on
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Shad the more I look at the website linked above the more I am convinced that with a script you are allowed under the law to import 3 months worth at a time (90 days worth it says). Maybe someone who's from Canada can point you in the direction of a doc who would be open to writing you a script (I can't see why the wouldn't if you agreed to monitoring) and then I think you'd be well within your rights to import and if someone called you up on it you could point them in the direction of the policy. please do read up on that page. I feel like whoever told you that you couldn't import was remiss in not explaining the policy to you. Anyhow hopefully you can get a script and then import your meds. It must be stressful not knowing how to get ahold of your medication...
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Frida,
i have proscription from Canada but officer said when you are citizen you can't have medicine from outside of country unless you are student and not permanent resident!
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Shad - was it a customs officer or a DHL employee? Cause the outlined policy says Canadians can and doesn't mention anything about international students or permanent residence. I think you are well within legal rights to import 90 days at a time. I've copied and pasted the relevant legislation below.
5.2.2 Canadians importing by means other than on their person (via mail, courier, etc.)
Consumers are encouraged to buy health products which have received market authorization from Health Canada. Market authorization indicates that a product has been reviewed by Health Canada for safety and efficacy and found to have an acceptable risk/benefit profile for the conditions for which it was approved. Health Canada also conducts post-market activities for these products, including the monitoring of adverse reactions and complaints regarding quality. Consumers are also encouraged to obtain their health products only from reputable or known suppliers/retailers.
A Canadian who chooses to obtain a health product from outside Canada which may or may not have been reviewed and market authorized by Health Canada is allowed to import:
A single course of treatment or a 90-day supply based on the directions for use, whichever is less, of a health product as long as the product does not contain a substance listed in Schedule F of the Food and Drug Regulations.
The health product must be for their own personal use, the use of a person for whom they are responsible or for use on an animal for which they are responsible.The health products must be in one of the following:
Hospital or pharmacy dispensed packaging;
Original retail packaging; or
have the original label affixed to it which clearly indicates what the health product is and what it contains.
Larger volumes shipments, multiple repeat shipments of the same product within short periods of time (<3 months), shipments accompanied by or associated with materials to be used for advertising or promotion, and/or shipments that indicate a Canadian business is involved in the transaction, will be considered commercial shipments and the relevant requirements will apply (see section 5.1).So Shad, have a look at Schedule F of the Food and Drug Regulations and if it's not listed there ( usually reserved for recreational, precursors, pain killers or anabolic steroids) then I think you can tell DHL that you will use a different postal service ( because they seem to be unaware of the laws) and recommence ordering your medication as per your legal rights as listed in Import and Export Policy for Health Products under the Food and Drugs Act and its Regulations (POL-0060)....
hope this helps out. I really want you to have access to these meds that you want and need and are legally allowed to access.
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Thanks for copied this for me,
by the way was custom officer said that, so I won't get by post anymore, but I have friends when they come to Canada they bring for me!
Thanks again!!
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Hi Pat,
have you managed to get xeljanz at a reasonable cost? My derm told me about a place in Melbourne that actually compounds it. He seemed to think it was cheaper then I think it is but the premise is that they make it into a sublingual so it's absorbed better so you take less and therefore save $$$. I'm not sure if that really makes sense to me, but I plan on calling them up to nut out the details (I have discussed it with them via email). They send to Sydney so pretty sure they would send anywhere in Oz. If your keen to get the details then pm me and I'll give you their name and contacts etc.
also if you find a way to import our laws here in Australia are basically the same as Canada - you can import 3 months at a time (up to 15 months worth in 12 months but only 3 months per shipment) if you have a legitimate script. The price for xeljanz seems to differ greatly country to country so it maybe much more affordable to look overseas.
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Permalink Reply by JeffreySF on
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Hi All,
I'm not really following this discussion.
One question. Is it working or not? 50/50?
Our SFO NAAF Medical advisor says Clinical Trials are ongoing but it looks like the current Zeljanz is not perfect. JAK inhibitor - like drugs might have a possibility of a treatment in the future. She says this is the best progress in 30 years of AA.
Best to All!
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Yes I think it's got a high success rate IF you are able to get the right dose (which seems to be different for each person) and if you are patient. It can take along time to work and I think taking it with some established treatments (minoxidil, steriod injections etc) can help it along. I don't think it's an easy fix - but I think it's the best treatment to date. This is just my opinion based on antidotal research and also trolling through journal articles and open source info. Success rates seem to be around 70-80% if you stay on it long enough and I think they'd be even higher if people could up their doses periodically to speed things along. And that's mainly on reasonably extensive AA, AT and Au. The major hurdle is access both financially and logistically, tolerating doses, and managing side effects.
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That's what seems to be coming out of trials. But more recent trials have been over a longer time frame ie > 3 months and increasing dosages, with steriod pulsing to get things started whereas earlier trials were more limited dose wise and generally were 3 - 6 months in duration, and this has lower success rates if that makes sense. In other words you need to be able to go up in dose and stay on a high dose for a significant time period to get those results.
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