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 Frida Rupert on
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Hi Meedo, my advice is shingles yes- as you need to be off xeljanz to get it, but you can have a flu shot on xeljanz (it’s not a live vaccine) so you can make that decision when you are comfortable with it. Once you start x you don’t want to be starting and stopping when in treatment, as I think you’d compromise your results. I do, unlike some, think some alopecians (not all unfortunately) can come off xeljanz but the wean off process is long and deliberately slow to avoid the body flaring up so coming off for a vaccine and then going back on would be quite a risk. I’m still digging around in my papers for those blood forms, will post the tests I had when I find them.
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Thank you Frida. Makes sense. How long after the shingles vaccine can I start X , providing blood tests are all good? Hopefully tomorrow I will do the blood work and awaiting my order from beacon . Will update on the blog regularly from now on as I believe in its true value to sufferers from this condition
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Hi Meedo, they seem to put Tofacitinib in the biologics category - which means between 2-4 weeks after the vaccine you can go onto the meds. See how you feel, I’d probably just wait that extra week until 3 weeks and than start. Much better to hold off before starting than start and have to come off a week later because of a complication. It’s a long game with the meds too, so as eager as you are to start- I remember I was!- in the scheme of your recovery a week will be a short time! Still looking for my blood forms- I have a doctors appt next Tuesday, if I can’t find something lying around I’ll ask then. I had to start leaving my forms with my doctor as I kept losing them or forgetting to bring them with me on the day - so she keeps them at the admin station and I grab them when I go in. Lol- I can be quite disorganised!
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Hi Frida . Thanks for taking the time to look into this. Yes I totally agree with you as it is a long recovery process like you said. Don’t worry about blood tests. I have already been to the go and requested CMP , CBC , hep C , and B HIV and fasting lipids . Unfortunately they can’t preform TB unless I have symptoms so I’m try to organise that privately! Waiting for the meds now. Beacon take ages to get back to you and I guess shipping the meds will take time too. I just hope I won’t have a problem with getting the meds through customs ( I don’t want to take a trip to Bangladesh any time soon ) lol
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Hey guys,
How long does it typically take Xeljanz 5mg twice daily to start showing results?
I have about 40% alopecia areata, 50% facial hair loss, eyelashes lost on one upper lid, and have had this bout of alopecia for about 3 years...
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it is quite varied - from 1 month up until 7 or 8 months. I took 5 months to get any growth and then by 8 months I had it all back. I think patience with xeljanz is important- some people see growth almost immediately but don’t get full growth for a longer period of time, other start slow and slowly get incremental growth over a year or two until they have “satisfactory” results. Others are like me, slow to get going but then rapid progress to full growth.
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Permalink Reply by Mashloum on
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Hi everyone
as update for my son progress /10yrs after using Xeljanz after 17 months.
Since he started shedding for the last two months, and after increasing the dose to 1.5 tablet for the last 45 days, shedding start to be decreased versus the previous three weeks, and this is the updated image for the current situation. His lab test are ok except for cholesterol due to medication high dose as well kids eating habits
In Shaa Allah things will become better
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Oh Mashloum, I’m sorry about this set back. Hopefully it settles soon. I think finding a smooth dose is more difficult for kids as their metabolism is changing and hormones are up and down. The good news is the shed has reduced so it seems to be settling again. Hoping he is coping ok and not feeling too anxious.
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Thank you Frida for your kind comment, we have always to look for the positive side where He still maintain and retain hair, so to recognize the blessing I need to compare it to nothing and baldness before we start the medication and Allah allow the medication to work on this
i am certain enough that foods always will come for my kid and for
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Hi mashloum . I was looking at this blog and I saw your sons progress from absolutely nothing to full regrow the . Very impressive and inspiring story . Like you said it’s a million times better than when he started off. At least now he’s a mild AA as opposed to AU . Don’t give up hope . Good luck
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