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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 bibby on
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I know this question may have been asked in the past pages but can someone please fill me in on some queries I have about the process of this assistance scheme copay etc and my best tactic to adopt on this drug. My situation is this ::- I've about €2500 saved for the Turkish version tablets ie approx 5 bottles. Assuming I get the copay assistance of $12000 that will add more bottles additional to the Turkish supply.What is the cost per bottle presently in the US (ie how many bottles will I get for the $12000) ? Also is it only one copay card per calendar year or can you reapply in the same calendar year? From my calculations I'll have between 448-504 tablets for my experiment depending on the retail cost of the US bottle. With this small amount of the drug is it worth trying? Sorry if this is long winded but I'm desperately trying to make this viable with my finances and broken will power. Thanks in advance
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Hi bibby, the copay card can only be used once in one calendar year.
The copay card will be 12000 so should get you 3-4 bottles. I recommend you phone aload of American pharmacies as each price is the different.
I strongly recommend you get 1 years supply in front of you as what I did was stop and start and you don't get the full benefits of xeljanz doing that as it usually takes about 3-4 months just to get in the system.
Another thing you would want to think about is how much is the trip to the US going to cost you ? For example if the trip will cost you 2000 euros would it be worth going to Turkey and buying 5 more bottles ?
Hope this information helps have a great day.
Kind regards
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Thanks for the info Singh , It makes no real sense to arrange a US trip just to get 3 bottles on the co-pay if I can just go to Turkey and get the same amount of pills for the same cost of the US trip. I would really appreciate your imput as to what I should be ordering when I arrive in Turkey. I certainly would like a full year of treatment of the drug. I see that the drug is available in both 5mg and 11mg pills. What kind of breakdown of this combination should I be ordering from the Turkish pharmacy to allow an approx 12 months on the drug.?
I am considering a one week package holiday to Marmaris in Turkey for mid February and would appreciate your help so I can estimate a budget for the drug. Thanks so much in advance .
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Permalink Reply by Rascalx2 on
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Well, you wont know if your a slow responder until you take xeljanz for a few months at recomended dosage. Its just my observation from taking the drug and reading on others' results.
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Did you get the medication from your local pharmacy? Some people mentioned getting it in turkey. Is it on the market yet in the US?
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i did month 1 5mg a day
month 2 to month 6 10mg/day
month 7 15mg/day
because I didn't have much growth on scalp my Dr advised me to stop. and paying 15mg/day is pretty expensive...
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Thanks return to life, i know the cost of this drug is too high, I too feel with a higher dose it might kick start things.
Kind regards
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I found my first patch on May 27th of this year, and then progressed to 100% within a few weeks. (I have only had alopecia for 7 months.)
To answer your question, yes... I do think my results came in more quickly at a higher dose (20mg/day).
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Hi All, i plan to go to Turkey to buy it..i want your help. Does anyone know if we need preacription or not? I dont have one..I am flying from US and would be really bad if they refuse to give it to me because I dont have prescription...
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Permalink Reply by serg navaro on
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If you're in America why don't you get a prescription and go through xelsource? I've been receiving my xeljanz for free for about 6 months now from them, it would also be a good idea to be monitored by a doctor as this is a pretty serious drug in my opinion. I've had alopecia since I was 13 and I've received really positive results in the last couple of months after starting 3 pills a day.
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Thanks because my income doesnt allow me to go through the hardship program and get drug for free.
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