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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 serg navaro on
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Awesome thank you so much, i hope this works, I've had 95% hair loss due to alopecia since I was 13yrs old, would be awesome to experience a haircut again :)
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Permalink Reply by Julie on
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I just talked to the xelsource people about the hardship and they said that the cutoff for single household income is not 90,000.00 but is actually 75,000.00. If you make above 75k then you have to write an appeal to pfizer. just a heads up for people who are expecting to get their hardship
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That's weird 2 different times I called and was told 90,000.$ by 2 different people.One person said to show your household expensives for the month (mortgage, taxes,gas bill,water and power etc).either way if you made 3 times that amount it's a hardship at 25, to 30,000.a year.Its not fair AA is the only disease that doesn't have an approves medication to take.Its sad people are suffering with AA and most can't afford to pay for xeljanz.I don't know how long I can keep paying for it if it doesn't get approved soon.
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I told them our combined household income for two people was 85,000 and she said that was okay. It sounds like everyone is getting different answers.
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I saw that there is a pharmacy in Sabiha Gokcen Airport, someone bought xeljanz in the pharmacy? this will avoid problems with customs officials and have your tax refund
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I cut and pasted the below from the instanbul airport website...could someone call them and see if they sell Xeljanz there? Obviously that would be ideal..fly in and out and not have to leave the airport.
Nuray Pharmacy is located at the departure floor of the Istanbul Sabiha Gökçen International Airport.
A traveller’s haven with everything you need from an Airport pharmacy - prescriptions, over the counter medicines, travel care, travel necessities, natural health supplements, personal hygiene products, cosmetics and baby supplies. There’s also a helpful, experienced and friendly Pharmacist on duty everyday.
Tel: 00 90 216 588 52 12
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I just got my first month of xeljanz via Pfizer hardship card. I make 87k and have 3 kids. There may be a scale or formula but no exact answer. They state I'm covered until December. ....so lets hope so.
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Permalink Reply by kimberj on
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I was told $90,000 as well but for combined household income for 2 people. I think the cutoff amount varies by the amount of people in the home. I will let you guys know soon. I was denied again today so now I am applying for the hardship.
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Most people take their' s one in the morning and one in the evening. I actually take both of mine together at bedtime along with my Plaquenil. My Dr said it would help me deal with the headaches better.
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Permalink Reply by sadele on
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I've been on Xeljanz for 6 weeks now and lost the little bit of hair I had left from cortisone injections. I'm trying so hard not to be discouraged, but it's difficult watching the growth I had fall out. I meet with Dr King next Friday and want to see about doing a combo treatment with Xeljanz and prednisone OR plaquenil. Has anyone tried this yet? I'm also looking into Jakafi but don't know much about it. Has anyone taken this with success of growth? I applied for the 10K hardship card but Pfizer denied me because I have my insurance through the Department of Defense. Apparently they will not allow the co-pay cards to be used if you have government insurance. I'm trying different routes but appreciate any feedback.
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I would also like to know if folks have had more luck with a combo treatment with Xeljanz or if any others people have had success with Jakafi. I have been on Xeljanz since February and have had very little success. I upped my dose to 15 mg/day since May and have had some more terminal growth but a lot of my growth has been vellus and I still look pretty much the same (completely bald on the head, some growth on eyebrows and eyelashes). I am thinking about switching to Jakafi or trying a combo treatment since I can't afford to be on Xeljanz for 15mg/day for much longer and am hoping my insurance may cover Jakafi....
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