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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 Carlie on
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Hi Nicole, I just had an alert saying my package is in Van Nuys, getting close. I still can't believe the price and I ordered 20 boxes which is 600 tablets. Did you say you had them tested?
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Hi nicole,
how much does Xeljanz cost with Beacon?
How do I order? do they ship to anywhere?
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Thanks @singh !
how do I contact them? do you have any email address or phone number? I tried on the webpage but havent got any replied.
Also, whats the name of their xeljanz version?
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Permalink Reply by Beth on
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I got mine microbladed. The BEST decision I ever made. I felt like I was a blank emoji... trying to draw them on every day wasn’t workin, especially when you are in a rush trying to get them even was s HUGE pain in the butt. Now they are growing back and filling in nicely. Definitely worth the money!!
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I thought microblading is a tattooing procedure so how does it grow back? Are you on Xeljanz?
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On xeljanz 3 years various dosages from 2 pills then 3 and even 4 for 5 months. On the 4 pills did see some growth arm hair more eyebrows etc.but couldn’t keep it up do to cost.I first started by using the copay card then was able to get on the hardship program for 3 years.Last year I couldn’t get on the hardship program so last March I decided to stop the xeljanz even though I still had several bottles.Didnt notice a difference for the first 5 months then all of a sudden the hair I still had thinned considerably.Decided to start up this past October with the pills I have left and use the copay card this year then again next year which would give me 6 additional bottles.But now my copay card won’t work have been on the phone hours with cvs ,insurance, xeljanz ,and my Doctor. I think I will have to go the Beacon pharmacy route but it is very confusing to me how to go about it.Can someone give a step by step how to do it and also how many bottles you can order at a time and the price.Sorry but I’m not very good wth all this and want to do it right.Also saw they carry Barcitinib was thinking that might work better for me has anyone tried it who didn’t get a good response from xeljanz.This is all so frustrating that we have to go through this not one covered prescription drug on the market for us yet everyday it seems like there are new ones advertised on tv for psoriasis.
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Hi all - I restarted Xeljanz 6 months ago, 5mg 2x/day, and I’m filling in multiple spots. Some spots are being stubborn though so wanted to get thoughts if I should try upping to 15mg or prednisone instead? Any thoughts help!
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Hi NYC Gal why did you stop and restart xeljanz?
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I honestly didn’t realize I would relapse if I stopped and thought I didn’t want to be on it forever. Few months after stopping, i lost >50% of my hair so had to restart. It’s good since def responding, but some spots are just being stubborn so wonder if prednisone or increasing dose might help. I’m thinking doing the pulsing as I don’t want to increase X dosage but wanted to get feedback (which I obviously didn’t when I first stopped lol - if i did, i wouldn’t have stopped and be in this situation :)
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