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 kevin on
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hi ahmed i think you'll all recover just need patience. you should have treated your patch because in general it is treated well with an injection of cortisone.
Seeing that it does not take long for you to alopecia you will recover all your hair.
me it is more difficult because I have alopecia for 20 years I have 31 I had periods of remission but it has always relapsed.
this is the first time with xeljanz that I had so much a good regrowth.
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Hi Kevin
Do you mind me asking your dosage. I’ve had it a long time too (12 Years )and trying to feel positive / hopeful and this thread has been a fantastic support and source of information. I have Tofacitinib from beacon and am thinking is starting with 1 x 5 mg in
The morning and 2 in the evening which amounts to about 12 mg for the equivalent Pfizer version. I wish you every success knowing how devastating this condition is
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Permalink Reply by Mashloum on
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Hi Magmck
I would suggest to start by the 5mg until the body got used for the medication, which will give chance to test your response for lower dose and after 90 increase it if response not effective as expected
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hi magmck no 5 mg is too little you will have no result you will waste your time, I tested the tofacinix laboratory in France it is not 5mg but 4.2mg.
I suggest you take 2 in the morning and 1 in the evening which will make a daily total of 12.6 mg of tofacinix. see if you have results at the end of 3 months and have a doctor follow you to check your blood test if all is well.
if you have no answer increases to 5 a day is the maximum that you can take a day checks your blood every 3 months.
pay attention to your diet to avoid cholesterol acne constipation abdominal pain. those side effects that most of us have them.
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Permalink Reply by macdev on
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bonjour à tous
A l'attention de Kévin: as tu eu facilement un rendez vous avec le Pr. Passeron? comment as tu fait... le secrétariat ne répond pas..
L'as tu vu en consultation de suivi après le traitement IL 2?
as tu eu des biopsies du cuir chevelu avant et après traitement
merci d'avance.
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Bonjour marc j'ai vue un grand spécialiste sur reims il connait tous sur la pelade et il l'ai a la page sur tous les derniers traitements .
Pour l'il2 il ma dit que les résultat sont médiocre et il ne sera pas approuvé pour la pelade.
Par contre il est très positif pour les inhibiteur jak il la fais plusieurs demande pour des essai cliniques et a la sécurité social pour que les médicaments sont pris en charge mais refus il faut attendre qu'il soit approuvé pour la pelade .
Je suis actuellement sous inhibiteur jak depuis 1 ans j'avais la pelade universelle depuis 20 ans et j'ai récupéré 60% des poils du corps et cheveux , je prend encore xeljanz il faudra du temps pour que je récupère 100% le professeur ma mis sous perfusion de solumedrol pendant 3 jours d'affilé pendant 3 mois pour activité la repousse .
Il ma dit pour que le système immunitaire se remette en ordre il faut continuer le traitement a long terme car une rechute peut survenir .
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bonjour
Merci Kevin.
Tu n'as donc jamais rencontré le Professeur Passeron à Nice , mais c'est à Reims que tu as eu le protocole IL2, j'ai bien compris ?
Et c'est à ton initiative que tu es sous Tofacitinib , mais suivi par un dermatologue français ,..?
Nous allons tenter Il2 si on trouve un médecin pour le prescrire..
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J'avais rencontré son equipe a nice comme j'habite j'ai suivi lil2 a paris avec le professeur bouaziz .
Aucun médecin ne te le prescrira car il n'est pas approuvé encore pour la pelade je l'achète moi-même et mon docteur me suis me prescrit le suivi sanguin et l'évolution .
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Hi magmck, I have AA for 10 years and now is 1 year and half taking medicine and 3 months ago I started 3 pills from Beacon morning 3 evening and I see little difference in my sides but totally goes so slow, sometimes I think I have to stop after spending so much time and money ( unfortunately no insurance coverage) but my friend encourages me to continue and I’m really tired of wig... some pictures added to see my progress, good luck to everyone!
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hello shad you have to try baricitinib who is an inhibitor jak 1,2 beacon sells it.
tofacinix is an inhibitor jak 1,3 I am a little in your case but I have better regrowth.
my protocol I take 2 tablets of tofacinix and one tablet of baricitinib 2mg a day it inhibits the voices jak 1,2,3 I started 2 weeks ago but I stopped baricitinib because I forgot my medicine in the hotel , so I pass a command of generic baricitinib.
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I ordered from beacon but it’s been almost 2 weeks and showing still at jfk customs. Has anyone ever had an experience where customs didn’t allow the meds in? I’m getting worried as I’m out of meds for almost a month and I’m afraid I’m going to start shedding right before my wedding in 3 months...
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Also if anyone has extra meds and live close to NY and is open to me buying a months’ worth, please ping as I would really appreciate it. Hope it holds me over until I get some (i may fly to Dhaka if customs don’t work out for me)...
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