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 kimberj on
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Thanks everyone for the encouraging words! Alopecia by far is one of the hardest things I have had to deal with! I'm sure there is no explanation needed, as most of you know how difficult it is to live with. It is nice to have a place to chat with others that understand me and my crazy autoimmune disorders. I hope for a cure for us all very soon!
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Permalink Reply by Gan on
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Hi kimber,
Now are you going to stop taking the pills or still going to continue?
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Hey guys and girls...
So I travelled across the seas to have my 3 month check up with Dr. King and there has been some progress according to Dr. King. He suggests I now step up the dosage from 10mg to 15mg a day. He was even saying he would love to start everyone on 20mg a day but has to play precautious due to individual needs.
He also prescribed me Predinsolne which I have to take 300mg once a month for 3 months (this only cost me $50...so wish Xeljanz cost this amount...lol). So I have to take a day break from Xeljanz once I take Predinsolone. Dr, King said that this should help speed up the process especially as I have taken it before and have had no side effects from Xeljanx so far.
As I'm from London, UK, Dr. King was saying that I can get Xeljanz slightly cheaper in Switzerland which I have explored but he said I could even make a bigger saving in costs if I bought it from Turkey. Apparently Dr, King is seeing a patient who lives near there and are making an addition amount of savings, but couldn't find one in Turkey who supplies Xeljanz. I did find a Canadian pharmacy online who prescribe 60 tabs for $1715 https://secure.adv-care.com/cgi-bin/ncommerce3/ExecMacro/new_frame/...
So I just wanted to ask all those that live in Europe who are buying Xeljanz if they are aware of any pharmacies that supply Xeljanz at a reasonable or cheap cost?
Finally congrats to all those who have seen progress, I guess this is a long road which we all are travelling on. Let's not give up hope!
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Hi LSWA. Could you explain how you are taking the Prednisolne. Are you taking it alone or in addition to Xeljanz. My doctor was also thinking of adding this also sine my progress is slow.
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Ok, so I am to take Xeljanz as usual, but once a month I must stop taking Xeljanz for one day and take the Prednisolne instead. I then resume taking the Xeljanz the day after taking the prednisolne.
I hope this makes sense.
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Do you have to have a prescription from the country you are buying the drug in. What I mean is can you take a prescition from a doctor in the US to Canada or Turkey and have it filled or do you need to find a Doctor in that country to write a scrip.
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I use the prescription Dr. King gave me. Only a selection of pharmacies outside of the US take American perscriptions. As the UK have not authorised Xeljanz, my dermatologist wont/can't prescribe me the meds. The pharmacy in Switzerland does accept it.
If Xeljanz is available in your country, you could try and get a prescription written up, but I'm not 100% sure.
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Permalink Reply by 3ebdie on
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Is there any chance you can ask Dr.King for which pharmacy we have to look for in Turkey? I don't mind going there as it's just a 2hr flight but still I find it hard to believe that it's so cheap over there. Even in Switserland it's like 1900CHF for 56 pills which is almost the same elsewhere. So maybe King can get us more info on this through his patient (in Turkey perhaps)?
I just hope this new baricitinib comes in for a better price at the end of 2015 beginning of 2016:
http://www.medpagetoday.com/MeetingCoverage/EULAR/52084
The phase3 trials are doing really well..
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I did ask Dr. King for further details about the place in Turkey, but he emailed me this week and said he was no closer to gaining the information (which I thought would be easy as he has a patient who uses a pharmacy in Turkey and thought he would just ask her). I too don't mind travelling there if in the long run it is cheaper for me to purchase. I tried researching pharmacies in Turkey but all that I found don't seem to stock Xeljanz. I also tried pharmacies in Argentina, Kuwait, Russia and Japan (other authorised countries that use Xeljanz) to see if I could buy it and if so if it was any cheaper, but no joy.
I think I may have to resort to paying over £1k for the meds, which will become more expensive now that Dr. King wants me to up my dosage.
If anyone has any info as to where else to get hold it, please do share.
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It is ridiculous that there is so much interest in this yet no FDA approval yet. Here is a question - anyone have ties at the FDA? With any alopecia foundations? It seems like this is taking forever, and none of the universities or research facilities post ANY news anymoee. Am i the only one who has noticed? And stop paying 1000 dollars for medicine! U are feeding the problem! I want my hair back too, but dont u think this is fueling the fire to help them milk the rich and desperate? What if the rest of us never get a chance because they know these desperate people will make them rich? Surely SOMEone must have more information!
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i will try to explain what in my opinion the real problem is. To get a fda approval the pharmaceuticals need to spend millions of dollars on trials for alopecia. They dont want to take the riak that the fda after all the trials and official filings says: no we dont approve this drug as there are to many risks associated with it for just some hair growth. So the companies will only get rich if it gets approval and the insurance companies pay for the drug. They would like the approval as well but the fda are a bunch of dickheads so it wont happen in the next 10-15 year i am afraid.
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