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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 singh on
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It's really good news, basically as alopecia has always been classed as cosmetic the FDA will hopefully now change its legislation and focus on developing treatments for alopecia. How ever I don't like pharmaceutical companies as there all in it for as much money as possible but still it's better we get an approved treatment soon.
I will email NAAf to see if they are going to put xeljanz forward to the FDA as a possible treatment for alopecia.
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Please let us know when NAAf sends out a repkt to you. I am really looking forward for day when there is a good treatment.
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I will do, I have emailed them hopefully they will get back to me tommorrow and will post there reply.
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Thank you :)
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I dont want to sound rude but when i read other discussion on how people are depressed or coping or asking about tips to cope i feel real angry. I mean why isnt everyone tryin xeljanz..i hate it when peoplr embrace it. I cannot embrace it. I will never embrace it. If xeljanz will be the official treatment i will be the happiest person. RA patients take it why shudnt we? Sorry for negative energy. Feeling real down today
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Hi Patches,
I've read some of your recent posts and agree with you.
I think everyone should have the opportunity to try Xeljanz, too. Because so many people don't respond to it and it's not approved for alopecia, insurance companies have no obligation to pay. At least the 3 month free trial Pfizer funds should assist insurance companies and physicians to make the determination on a case-by-case basis. My son is showing results on it so our insurance company agreed to cover it for 6 months. Then we go back again and appeal for another 6 months. That's the way it could work for everyone. I'm quite surprised that not every dermatologist in the country goes this route. I often read of people on this board trying to find a term that will prescribe the medicine. Why? All of them should for at least 3 months.
But the fact that the federal government is behind alopecia research and, what my son's dermatologist said, that pharmaceuticals are jumping into the research and a cure should not be far off, gives me hope.
An important step was made with the Yale physician who used Xeljanz on his patient and reported the excellent results.
I await a cure that works for all.
That day will come...sooner than later...thanks to medical advances and support from the government.
Are you on Xeljanz now?
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Thank you! I am frustrated because I would do anything to fix my problem. Why give up. Why arent people trying everything they can to get cured. Alopecia is a disease just like RA.
Copay didnt work for me and my insurance declined so i bought xeljanz from Turkey. I just hope people will get enlightened and will get to knw that there might be solutins out there for us.
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copay is only for the USA
Pfizer Canada do not give copay for xeljanz
and getting the script in Canada from a Dr is more difficult than in the USA.
I am on xeljanz but I had to spend crazy amount of money. the alopecians I know personally can't afford it. I agree with what u said. I will personally try All to beat this disease that destroyed my life.
and regarding your government lol don't be too optimistic your autistic tangerine president recently made a massive cut in the scientific research in favor of military...
you know also what I hate also? alopecians themselves who struggled with this disease for +10 years but disappear when there treatment worked. that's not how a community and a support group is build.
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Forty years with this disability with no reasonable treatment.We are fortunate to have a direction for sustained treatment now. That orange haired guy noone will give a chance has spoken on expiditing the FDA system for new drug treatment. I hope he does what he says. In a world where everyone is a victim noone gets heard.
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Permalink Reply by ChrisPowers on
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"expediting the FDA system for new drug treatment" <--THIS.
I don't care what color the guy is (and quite frankly, to see something like that even mentioned on this message board is both disappointing and patently hypocritical), but if he can pull that off, I'll put a Make America Great Again sign on my lawn the next day (if I ever have a lawn, that is).
Incidentally, the "big pharma" / "evil corporation" bashing that goes on here routinely is equally confounding. Hello, people! Guess who developed this medicine that so many of you who decry the evil drug companies have so benefited from? Not so principled about their abhorrent quest for "profits" when you personally benefit from the results, I guess?
And to save myself the effort in advance, to those who will complain that the evil insurance companies won't cover this treatment for alopecia, a big part of the reason for that is that it lacks FDA approval for such use. Who, pray tell, do you think is responsible for that? Hint: it's not the maligned capitalism you so revile.
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I work for big pharma. I did this for the last 10 years. I have nothing against the system.
if you think Trump didn't reduce that budget then you are just unaware.
and to tell you the truth sometimes being unaware is a better peace of mind.
all good!!!
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He proposed massive cuts but a budget hasn't been approved yet. I'm sure it will get approved by the sheep that run this nation (i.e. If the pres puts something out every congressman and senator in his party will approve while those not in his party will tbe next which is DISGUSTING - SERVE THE PEOPLE NOT THE PRESIDENT!!!!)
Anyways no funds are cut now. I work with federally and industry funded research and clinical trials and there has been zero cuts yet
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