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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 YRDRV on
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Hi lu391,
I hope you're doing well.
I have sent you a friend request, I hope you're willing to accept this as I want to ask you something.Many thanks.
All the best.
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Sorry to tell you this but 2-3 years patent expiry is pie in the sky. I checked the patent expiry 4 months ago and it stated the expiry was Dec 2019. Then I checked again last week and this has jumped to Dec 2020. So who is to say in 6 months from now the patent expiry will not be Dec 2025. Seems to be no logic to it and all the while we victims of this disease are being fleeced by Pfizer and the insurance companies who we pay our premiums to annually have a convenient arrangement of ignorance to our plight. Very depressing situation for sure.
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That is really sad news
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Where do you find such information?
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https://www.drugs.com/availability/generic-xeljanz.html
Same site that said patent expiry Dec 2019 4 months ago (in fact I posted on this forum back 4 months ago when someone enquired about the patent expiry and I stated Dec 2019 as I referred to same drugs.com website at the time) Now hay presto as if by magic a new date Dec 2020. Nice little extension for them there.
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It is a game...they create the extended release pill form to extent the patent.
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Really sad news. All they care about is money. While we suffer with our disease.
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Yes cws, that appears to be what has happened. There is not much decernible difference really in their product either , they only have 30 pills in the 11mg XR bottle vs the 60 pills 5mg standard so it really only helps the patient by requiring once daily instead of twice daily pill consumption. So to sum up. This drug may never be off patent. All they need to do is slightly alter the MG content a few years before patent expiry (example launch a 3mg pill taken three times daily)and all of a sudden they get granted an extension 12 months to the agreed patent expiry. I am in the wrong business. If I tried this tactic in the electronics field the patent authorities would laugh me out of existence.
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The FDA is struggling a bit with allowing biologic generics right now anyway...I have not researched this lately but they are hesitant to the idea of biosimilars. If so, as much as I hate gov intervention, there needs to be price laws around such drugs after patents expire. I am not sure the free markets will solve this without biosimilars allowed into the market place.
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I think this kind of patents are only allowed for a set period of years after which it cant be patented again so that generic drug makers can make use of it. This is just my assumption but i could be wrong. Maybe someone with the knowledge of US patent system can shed some light on it.
And as Singh has said, Pfizer was already denied a patent for Tofacitinib, meaning generic drug makers in India could make it even sooner than 2020. So many possibilities, but the best thing that can happen for us is that the drugs that are being tested for Alopecia, need to get approved for Alopecia. Which is going to take a few more years. Maybe they are waiting for the Patent expiry date so that the same drug can be again patented for Alopecia. lol
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Permalink Reply by ChrisPowers on
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These evil pharmaceutical companies that you love to hate despite the fact that this very board exists because of the remarkable effects of one of the very drugs that they spent tens if not hundreds of millions of dollars inventing are charging 1000% more than the cost to manufacture the drug because the cost of developing a drug from concept to market is 1000% more than the cost of manufacturing. You know, like the years and years of tests and clinical trials that are required before your beloved FDA is willing to permit you to purchase them.
These are difficult concepts to grasp, I know. But I cannot help but marvel at the level of disdain directed at the very entity that has made this treatment possible for everyone on this board. People who have been completely hairless for a decade and finally have a chance to be normal again are on the one hand completely indebted to these companies for bringing this drug to market while on the other hand decrying those very companies for doing so.
They can charge exactly whatever price you think is "fair" tomorrow. The only downside will be that they will lose money on Xeljanj and cease developing medicines like it in the future, and all these drugs in the years-long pipeline that every non-responder on here is so eagerly anticipating will never manifest. The important thing, though, is that the drugs that they never bother to develop because it is not cost-effective to do so will be endlessly affordable.
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When I seen my New York doctor in 2015 she told me the patent runs out in 2020, so that could of been a mistake putting 2019 down.
How ever India have already been doing a generic version and pfizer are trying to sue them so I can't see them pushing the patent a lot more years passed 2020 plus there are loads of other jak inhibitors are coming so the competition is fierce and they will likely have to drop there prices in order to compete.
For example Baricitinib is now approved in the uk and Ema even tho FDA didn't approve it. So I will keep everyone posted on the prices of xeljanz and baricitinib in the uk..
Kind regards
Singh
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