Alopecia World
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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 Newjack on
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I didn't think I'd have so many issues going back on this medicine. When I first started I didn't have as much worries, but after I had a few complications last year and lowered my dose. Ever since July this year it's just been an up and down ride and I don't know why.
I'm pretty upset right now. I don't understand why I'm not healing instead I'm getting surprises left and right. I had healed better with 15 mg than 20.
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what issues are you having?
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I got a spot in July and its slowllllly filling back in with shots... In october the hair behind my ears are fading away. Its not really an AA spot but its fading..
When I was on 15 mg I never had a spot never had an issue. I must be going through something... Yet I feel fine.
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What change did you make that you think caused the loss?
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You said when you were on 15 mg you didn’t have an issue. did you change your dosage?
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I'm betting you are overthinking it. Going from 15mg to 20mg wouldn't make you lose more hair. We don't even know what trigger the breakouts of these conditions in the first place. Could be a million things.
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I may be, but it seems like I go through an on and off shed since I dropped from 15mg to 10 mg then back up to 20 mg.
The only thing I can think of is I went through a minor surgery in March 2019 to correct a fistula. I still have it but it is not bad and is manageable. The doctor calls it a low grade infection and I can live with it but the next steps would be a surgery that could be a 6 month recovery time and I am not sure if I really want to do that. I much rather wait for this to heal on its own since its not really that bad.
Could it be the fistula? Sure... But I am not convinced. I have had it since August of 2018 and got my first spot 2 weeks after dropping my dose to 10mg. Was my infection in August - Dec 2018 bad? Yes. Is it now? No, not even close. This infection isn't like pnemounia or a sinus infection.
I am on 20mg now and I feel like I should be responding better than I did at 15mg and I am not which is why my paranoia is through the roof. I feel like the alopecia is extremely active still at such a high dose and I need something to put it to sleep for midterm. My patch from july is slowly growing back. My patch in march went from a size of a US Quarter to the size of pencil eraser and is still there. It is interesting how slow I am progressing after I lowered my dose.
All of this, while I noticed the hair behind my ears are thinning out. They arent bald just thin and quite noticeable and irregular. They got thinner with each haircut, and when they grow back its just thinner...
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Same here. Every day when I wake up its like 20 hair on the floor etc from when I took off my shirt or cap. Feels like the hair loss never stops.
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Bonjour,
Je viens de recevoir TOFACINIX,
je veux juste savoir quelle dose vous prenez.?
2 le matin, 2 le soir
ou 4 comprimés à des heures différentes.
Merci pour vos réponse.
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Permalink Reply by Fingers_Crossed on
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Sa fais longtemp que je ne parle pas or n’ecris pas en francais alors si vous plais patienter :)
Je prend la medication from Pfizer, 1 x 5mg le matin et 1x5mg cheque’s soir. Sa semble que les comprime de tofacitinix sont in peux moins que 5mg comme 4.7mg alors commences avec 3 comprime par jour (2 comprime le matin et 1 comprime chaque soir). Si apres 3 mois tu vois pas de repousse tu peux augmenter a 4 comprime (2 chaque matin et 2 chaque soir). C’est seulement important d’avoir in dose chaque 12 hours. Aussi si tu essaye de prendre les comprime at tous differente heur, c’est plus difficile a rappeller.
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Permalink Reply by Mashloum on
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Hi everyone
Just as an update for my son progress after increasing the dose to 1.5 x 5mg for three months (started medication since Apr 2018 on one tablet 5mg) this after the shading started in Jun 2019
so far regrowing started with promising results as per the following images
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