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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 mastros on
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thanks. me too. sorry that I replied to your post by accident instead of replying to the thread.
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Awesome!!!! Thanks for giving update. So encouraging to hear about successes!
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Thanks for the reply JG, expensive still.
Looking good mastros! Can I ask where you get your xeljanz as i notice you are from Amsterdam ?
Another few months and you be going for regular haircuts mate
Kind regards
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Thanks a lot.
I have been buying Xeljanz from Istanbul, Turkey from the pharmacies mentioned in previous posts.I am thinking to submit a case to the insurance with before and after photos aiming to prove that the medicine works, so they could consider paying for it.
I have head that this way it could be possible in the UK. any news from your side?
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Do they speak english in Turkey and would it be a safe place for a single woman to travel there? I'm getting ready to make a trip to Mexico City but it's still 900 usd for 56 tablets even there.
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Istanbul is safe. It is crowded and it receives tons of tourists. People do speak English, especially the younger generation. Book a property where you see the larger clusters of properties in the map of any online travel agency website and you ll be fine.
You can stay for instance close to Taksim square (it's the main square) and Rebul pharmacy is close (5 mins on foot).
The cost is around 400 usd for 56 tablets since turkish lira is falling.
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Thank you Mastros, that helps a bunch. I will plan my next trip there, that's a great price! Any regulations on carrying bringing it back and does it require a prescription? In Mexico City they require a prescription from a doctor provided by the pharmacy. I will update everyone after I return. I plan on doing a little exploring and even checking out Costco. pharmacy. I wish the person that bought it in Mexico City some time ago would have kept us posted and given a little more information. It's very stressful going to a foreign country, not speaking the language and buying something very expensive. Especially a country where there's so much poverty.
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I am not sure about officially regulations.
I have travelled a few times and there has been no check on prescription neither on Turkey nor in other European countries. Just normal airport security (there is two luggage security checks in the airport of Istanbul but it is just the normal there for international flights). Nothing more.
Also, I think a lot of people are profiting of things like that in Turkey so they don't care (for instance there is a lot, like really a lot of people going for hair transplant....you will notice them around Istanbul with headbands and bloody scalp...)
As for going to Istanbul, the situation is much better in comparison to what you described. Turkey is a big country and has places that are a bit more tricky. Istanbul and cities in the coast like Izmir are ok.
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Hi my name is Sasha and I am currently 18years old. In early September 2016 I had My first ever episode of Alopecia Areata, within 2 weeks I had lost around 70% of my hair. Because of this I was put on Neoral and 25 mg of Prednisolone as well as cortisone injections and within around 8 weeks I I started seeing regrowth. This lasted until early January 2017 when I had decreased to 1mg of Predniolone and relapsed, resulting in Alopecia totalis. I then tried going back onto my full dose of 25mg of Prednisolone as well as staying on the neoral but this time no regrowth occurred. I then in early March 2017 started tofacitinib (xeljanz) and when switching to this I developed Alopecia Universalis. Moving into August 2017 I noticed short, fine, blonde hairs all over my head, eyelashes, eyebrows, face and body. Since then I have had full regrowth as seen in my pictures and I stopped wearing my wig this February. 2 weeks ago I notcied shedding, I think saw a patch at the back of my head. I straight away had cortisone injections. Last week I then noticed 2 patches at the front of my head, then one more at the back. I was put on 12.5 mgs in hope of preventing more patches. However, this week I have noticed around 4 more patches and have still had excessive shedding. Hoping this will all sort itself out but seems to only be getting worse. In the pictures are the main patches but there are also a few smaller ones scattered throughout.
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Wow Sasha, so in Aug of 2017 you were completely hairless and now after 10 month you have the beautiful eyelashes, eyebrows and hair? I think that's amazing. I too have AU going on 2 years now. I just started xeljanz 2 months ago and have the fine blonde hairs, fine lashes and brows. I am getting ready fo make a trip to Mexico City and it's been very stressful. I made the mistake of telling my mother and sister what I am about to do and they won't stop hounding me about the dangers of Mexico. They don't understand what it's like being bald, especially my sister who says I'm beautiful and no one cares. I care, and I'm the one that has to look at myself in the mirror. It might sound vain, I know it's not life threatening but it changes your life, self esteem and control over your body. I need to do whatever it takes to get my life back if it's possible and I can see you've had amazing results!
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Hi Sasha - ask your doc about oral betamethasone - pulsing 5mgs 2 x a week. It’s a longer acting and stronger oral steriod that may help a bit more then pred. It’s pretty strong hence why only two days a week but pred did nothing for me - betamethasone got xeljanz working for me. Good luck - relapses are angonising.
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