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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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I am not sure if it is illegal or not. I understand that pricing is a big game.
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depends on country to country.
for example I am not allowed to bring medications in canada from outside.
I am allowed to travel from Canada to xxx and come back to Canada while having my medication with me. but if u say it's for ur usage then they shouldn't make a huge problem. best thing is to bring a MD script and say u are travelling with it just in case you are stuck somewhere u need to have always enough medications.
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I've booked a holiday to Thailand for June but have a stop over 24 hours on my return in Istanbul . I'm planning on buying 3 bottles of xeljanz but to maximise its effectiveness/costs/treatment timeframe I'll be looking to buy 11mg pills NOT the 5mg. Are you aware if this pharmacy can supply the 11mg tabs?
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I am not sure about it. Give them a call. Please let us know if the provide 11mg. It will be good to know.
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Dear Themis,
I want to buy Xeljanz as I have AU for almost 20 years. Could you please let me know how much did you buy Zeljanz?
Does pharmacist ask for prescription?
I would very much appreciate your response as soon as possible.
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Hey everyone,
Many of you don't know me as I don't post often however I am looking for some encouragement. I have been on Xeljanz for over a year, with 100 percent regrowth. I am so thrilled. However, in the last week or so, I have noticed mild shedding in one area - it also looks as though a small spot is beginning to form.
My dermatologist does not have great bed side manner, and takes months upon months to see. He tells me not to worry, and some shedding is normal. I am sick to my stomach about this as I thought everything was going amazing.
I am hoping someone has some insight or positivity to shed on this.
Thanks in advance..
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Hey xeljanz girl,
Do you have a picture of the spot beginning to form? I thought that this was happening to me as well and the spot never got worse than what it was. I have also had 100 percent regrowth but stopped the medication because I became pregnant so it would see more likely for this to happen to me.That is strange this would be happening, have you had a high amount of stress or any illnesses? It could just be normal shedding, try to not worry yourself I know that is a lot easier said than done though.
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Thank you for the kind words, they really do help! I am not experiencing any out of the ordinary stress what-so-ever. So you had a spot appear while you were on xeljanz as well?
I have attached a photo of what appears to be a spot forming.
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FullSizeRender.jpg, 678 KB
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It looks similar to what mine looked like, also at the base of my head. I had it happen once while on xeljanz and once a few weeks ago and like I said I've been off xeljanz now for almost 8 months. I don't doubt that it was a 'alopecia' spot but thankfully it never got worse. I would try not to worry right now and see what happens. What dose of xeljanz are you on?
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I am on two pills a day (I don't know the exact dosage) but I am pretty sure it is the 'minimum' you can get per pill. I will try and remain positive and optimistic - thank you so much again.
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I would say maybe up your dosage but I don't want to say that unless your doctor says it's okay of course
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Congratulations Katie girl that's wonderful news! Being pregnant and off xeljanz for 8 months and not losing your hair your probably one of the lucky ones that good be on a low maintenance dose.
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