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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 TM23 on
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I agree with you. Cost of medicine is super expensive. I am from India and high manager post engineer get 25000$ a year after tax deduction or max 30. So no one can give 90-100% of money in just medicine.
I'm keeping my eye on cost of the medicine. I have a hope one day cost of Xeljanz will come down.
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Has everyone who is taking Xeljanz waited until they got the results of their first blood work before they actually started? I had mine done this morning and the results of it won't be back for 4 to 5 days. The results will obviously be the same whether I start it today or not when I get them but I just wanted to see how everyone handled that and also if anyone knows how this was handled by Dr. King in the trial studies. Thank you.
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I got my results back same day I started on Zeljanz because it took me several days to get the drug.Does anyone live in the Los Angeles area have a good doctor that is treating them with Zeljanz.My doctor is only treating me with the drug and doesn't know much about it.Im afraid if I don't have some noticeable growth when I see her next month she won't give me another prescription!Going On week 15 and still no growth a lot of tingling not sure if that's a good or bad sign.And to think I started with about 30 percent hair on my head and all my eyelashes and nose hairs and 40 percent eyebrows. Trying to stay positive but getting harder everyday. Would upping my dose to 3 pills every other day help? Or would it be better to just go on 3 a day for a month.Any news on anyone getting the extra 10,000$ hard ship card.
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Yes I think upping the dose would be the trick but that is just my personal opinion. I have not received the hardship card yet but they are supposedly in the process of seeing if they will approve. I am on vacation this week though so I'll call them again when I'm back
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Permalink Reply by Lindzzej on
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Hi all
Question about the co-pay card....so you go through what appears to be their very easy 3 step process, print the card and then how do you go about this? When I went through the appeal process with my private insurance, I originally attempted to get it filled at a local pharmacy and they said they don't carry it nor will they order it. Help is appreciated.
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Dr. King suggested we use Quality Care Drug Centerbrook Ct they ship anywhere in US and carry it in stock - cheapest I have found in U.S. - we use them very good
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Chubs...it's $2,742 currently (Quality Care in Middlebury). We just ordered our first shipment from them. Before that we were using Walgreens which was $100 more expensive. I still believe that we can obtain Xeljanz cheaper within different countries...The search continues.
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Got Zeljanz for 2,109.00$ at Walmart using the GoodRx drug discount card on line.type in Zeljanz discount coupons can print it out and they will send you a plastic one in the mail
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Your probably right Seahawks Dad, as I discovered buying it in Turkey. It is approved in Argentina, Kuwait and the United Arab Emirates (as well as in some countries in Europe) so your best bet would be to try and find a country where the $ is very strong, source as to where to get it and try and buy. The only problem maybe as I discovered is that they may not ship internationally, therefore you may have to consider taking a trip, but again it maybe worth it.
The cheapest cost I found for one months supply via a Canadian pharmacy worked out at £1200. I managed to get just under 3 months supply (if on 2 tabs a day) and round trip to Turkey (with accommodation) for £1600. Massive saving. I will be doing again and tightening the belt a bit until the possibility of getting a co-pay card in the new year (not guaranteed though).
It would be really useful if someone/anyone who had connections in any country that stocks Xeljanz can get more info and post it online, as we are all on the same journey and would no doubt help everyone reach the same goal.
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What Canadian pharmacy ?is that 1,200 in dollars and they shipped to the U .S.?Do you have their number and did you just fax the prescription and pay with a credit card?Thanks with any info
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No it was $1800 but when I converted it, it was £1200 sterling. I'll have to find it again but I did post a link on one of the pages to show where it was. They would ship to the UK (where I'm Based) and I'm sure they took the prescription too.
Couldn't authenticate if they are fully legit though as I didn't buy them.
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