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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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Replies to This Discussion
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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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Permalink Reply by singh on
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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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https://www.google.co.uk/amp/health.economictimes.indiatimes.com/am...
Just so people can see where i got the information from and hope this brings some positivity back on xeljanz. People can get generic xeljanz right now in I India but please becareful so if you was to buy in India I would suggest getting some and getting it tested by pfizer first.
Kind regards
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Thanks Singh. This gives us hope thay we dont have to wait for long time.
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Welcome, and yes I just hope the treatment for alopecia comes sooner than later.
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Hi Singh. Just wondering are you taking xeljanz urself?
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Hi, no at the moment I am not. Was on it briefly for 3 months but wasn't on a consistent dose to tell if it worked or not. However it is now approved in the UK so I am working on obtaining xeljanz to see if it will work on me and to see if it's sustainable.
If I do purchase or get xeljanz I will keep everyone posted.
Kind regards
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Hi Singh
Could you tell me where in Turkey you buy it.
And would it be possible to message me
Denise
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Hi Everyone-
I've had AU from 8yo-15yo, AA to 15yo-28yo, and back to AU for 14 years now. I've been on Xeljanz for 9 months now, 3 months on 10 mg/day, 3 months alternating 15 and 20mg and 3 months on 20mg. I'm debating to stop since all I have is vellus fuzz, has anyone with AU for as long as I've had grown back cosmetically acceptable hair after staying on 20mg for a longer time?
Would appreciate feedback, as I don't want to spend the next year chasing hair but I also don't want to come this far if there are others out there that have had good results and are similar to me.
Thank you all,
Stacy
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I know someone who had great results with high dose of xeljanz after 30 years AU.
great results means cosmetic. he doesn't have full thick hair everywhere but more than enough to rock a solid haircut.
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