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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 Sasha I currently take Xeljanz and Betamethasone 6mg 2, two consecutive days in the week. and I do not have the swelling of the face. I had already taken prednisone 35mg once when I stopped this part in 1 or 2 months
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Bonjour Kevin,
Je comprends que tu as deja pris des medicaments qui ciblent IL-2. J'ai pris le Xeljanz pendant 10 mois sans aucune reponse. J'aimerais savoir quelle etait ton experience avec les medicaments IL-2 - ce que tu a pris, les resultats, pourquoi tu prends maintenant le Xeljanz. Je suis AU depuis 1.5 ans, et bien evidemment je suis decue de ne pas aboir des resultats avec Xlejanz, et je deviens de plus en plus desesperee - je vais t'envoyer un friend request et si tu pouarris repondre a mes questions je l'apprecierais enormement!
Merci,
Anna
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Hang tight Anna! Something will work eventually.
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Hi friends, I started in March 10 mg and now almost 3 weeks 15 mg and not too much regrow ( between 2 months on prednisone) I think I have to go on 20 mg
what do you guys think? Thanks for any suggestion!
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It seems those that are having good results with Xeljanz are taking 20 MG or more
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Permalink Reply by ChrisPowers on
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Were you taking 10mg / day, or 10mg twice per day? Are you now taking 15mg / day or twice per day?
Either way, three weeks isn't enough time to evaluate response, in my opinion. I'd personally wait at least three months before deciding if a dosage is having an effect or not.
Hair grows slowly. Also, it takes some time for the cellular machinery that's been under constant attack by the immune system all this time to be in a position to start producing hair again. It doesn't just turn on and off like a light switch, I don't think.
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Does anyone know when will this drug be covered by insurance and be the stabdard deug in the states..without having yo go through copay or go to Turkey! Its been more than 2 years since they diacovered xeljanz helped and still no news if in near future this will be the drug for us
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Has anyone who's taken Xeljanz noticed a side-effect of depression or anxiety, or any other negative effect relating to mood?
The reason I ask is because I came down with the flu on Thursday night (four days ago), stopped taking the Xeljanz since Friday morning just to be safe, and the depression and anxiety that I've been struggling with for over the past two years practically disappeared overnight.
I felt pretty OK toward the second half of Friday, which in and of itself is a rare occurrence for me, and have only felt better and better each day since then. I'd say yesterday is one of the best days I've had in years, and it was also one of the most stressful days, so I don't think present life circumstances are at play.
Literally, the only other recent change is the illness itself. I've changed no other medicines, supplements, diet or anything else. Every other aspect of my life is unchanged. It's quite bizarre.
I had increased my dosage of Xeljanz maybe six weeks ago or so, and was starting to get some fuller results on my face, so I'd hate to have to discontinue it, but if taking it versus not is the difference between feeling the way I do right now and the way I have over the past two years, then forget it, I'm ditching the stuff.
Anybody have a similar experience?
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Permalink Reply by serg navaro on
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I began experiencing loss of sleep and therefore would be in bad moods and would have bad days. I decided two weeks ago that it wasn't worth it since this drug is only temporary and will never been for alopecia specifically. There are many treatments coming out that are specifically for alopecia. Therefore I am not stopping xeljanz as a treatment. There has definitely been a change in my sleep and sleep great with no problems now.
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Been 6 months on Xeljanz now. 60% improvement (alopecia areata). Also taking methotrexate. Both were prescribed for psoriatic arthritis. Received kenalog injections yesterday to stubborn patches. I am expecting full regrowth by April! I am going to add Allegra and biotin. Feeling very confident!
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