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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 AlopeciaDestroyedMyLife on
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Wishing you all a merry Christmas and a hairy new year
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Permalink Reply by Xeljanzmiracle on
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SUPER HAIRY New Year to us all, lol!
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Permalink Reply by Sp06 on
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Its been exactly two weeks since i started xeljanz, and Im taking pictures every week. So far so good, theres been no side effects. About how long did it take you guys to start growing in eyebrow hairs? And Merry Christmas to all of you!
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Is it ok to take mucinex for stuffy nose and congestion while taking xeljanz?
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Yes, Sp06. I have taken medicine for slight colds, with Xeljanz, etc. One GREAT thing about Xeljanz: I can take it on am empty stomach, morning, noon and night. Never have had an upset stomach. Take it with alcohol, no adverse reaction. For such a SMALL, POWERFULL PILL, I haven't had any negative side effects whatsoever! Has anyone on here had any bad reactions to Xeljanz?
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I had a fever last year from it. I reduced doseage to 1 pill a day in combination with antibiotics.I've had colds/flu slightly more than I would normally however it has always cleared up.
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Hi !
I have a question. I wanted to ask you whether anybody knows if it is possible to reduce the quantity of drug (and then take it for a long time) without loosing hair.
My daugther had a completerly re-growth using Jakavi mg 20 twice a day. After one month of interruption, she began loosing hair again and now she started taking the pills again.
Our doctor is new to both this kind of disease and the cure.
He suggested to reduce the dose to 1 pill after 2 months. But it is just a trial ...
Sorry for my English. I'm Italian. I hope you understand what I mean
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Raffaela it is pretty much well known now that discontinuation of the drug completely will most likely cause a relapse. There are even some people who are lowering their dosage though and starting to lose although. I am on xeljanz I was initially taking three pills a day. Since reducing to two pills I have not lost any significant amount of hair and it has been about three months. I hope to even go down to one pill but will see.
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Thank you for yr reply.
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raffaella sono italiano anche io, non sapevo che in Italia ci sono dottori che prescrivono il farmaco Jakavi per alopecia, mi puoi dire chi è e se ti è passato dall' ULSS, io ho alopecia universale e mi interesserebbe provare questo farmaco.
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Ciao.
Il problema è il costo della cura. In Italia i farmaci off-lebel non sono fornibili e devono essere acquistati privatamente in Svizzera o in Croazia. Noi lo acquistiamo in Croazia al prezzo di 4.850 euro a confezione e una confezione è per 1 mese di cura. Anche mia figlia aveva l'alopecia universale, ha iniziato la cura l'8 aprile 2015 e la ha conclusa fine settembre 2015 con una completa ricrescita dei capelli. Dopo circa un mese però ha iniziato nuovamente a perdere capelli e ora ha ricominciato la cura da 2 settimane. Ora dovremo trovare il dosaggio giusto per il mantenimento. Se fai "due conti" puoi comprendere qual è il costo della cura. Un investimento !
Inoltre non sappiamo per quanto tempo questo farmaco dovrà esserle somministrato.
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