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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 lu391 on
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Now that xeljanz has been approved also in Europe for rheumatism, I hoped that it could be bought in some other country than Turkey, but I did not hear anyone who was able to buy it
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The problem is that when I return from Turkey, there is a lot of security at the airport, I would not have any problems if the Customs find me 5 xeljanz boxes in my suitcase
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Hey everyone... just sharing my monthly update:
13 months from onset of rapid diffuse AU (no prior personal or family history of alopecia) :: 10 months on Xeljanz :: 5 months on Cortisone injections.
Pleased with my progress, even though it is slow. Still thin in the front of my head, but I'd say I am over 90% coverage. Brows and lashes are stable... those are maybe around 70% coverage. Scalp shedding has slowed... only finding about 5 hairs on my hands after shampooing. Getting my blood work done tomorrow to make sure
my levels are all normal. Right now, weight gain and acne are the most frustrating side effects for me on Xeljanz. Still on 20mg/day for now (have been for about 4 months, prior to that I was alternating 15/20mg for 3 months).
Other things I am doing in addition to Xeljanz and Cortisone shots: I stopped using minoxidil because it was making my heart race. But I've continued rubbing essential oils on my scalp once a day, taking Hair Skin Nails vitamins (Biotin) twice a day, using a TheraDome Laser Helmet a couple times a week, using RevitaLash and RevitaBrow serums once a day, getting regular allergy shots, and avoiding foods I have known allergies to. - Attachments:
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Just Returned from Puerto Vallarta and there are a ton of pharmacies.I was able to get my lattaise for $42 instead of $125.Asked about xeljanz and told them it was for arthritis they didn't know what it was and tried to sell me another drug.
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Wow congrats!
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I have been on two pills a day for about one year now. Unfortunately there has been little to no results. My derm says the results of the study was not that good. I told him about this forum and about how many people here are on more than 2 pills a day.
He does not want to increase my dosage and said that based on the study increasing the dose from 2 pills did not improve.
I want to try to increase my dose... is there anything I can do to get more Xeljanz? My bloodwork comes back perfect every month.
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Hi Ben,
A lot of people on here have seen results on a higher dosage. All the the factors you have to keep in mind are how long have you had alopevia got the for a higher dose might give you that initial boost you need.
Or it could be the wrong pathway hence why some people don't respond to Xeljanz. I know there was a girl on here who didn't respond to tofacitinib but then responded to ruxolitinib another jak Inhibitor.
May I ask are you AU? Or AA
Kind regards
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Hi Singh,
Did you receive any repky from NAAF?
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Permalink Reply by Rascalx2 on
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Hey Ben Ive been on xeljanz a year this july, I increased dose from 10, to 15 to 20 mgs. Im AU a year and a half, and been on 20 mgs for past few months and the reuslts are not good. Very little hair on sides of head, very faint fuzz on brows, and some beard which is white...I have absolutley nothing anywhere else. all hair is white. If you are not standing 2 feet from me you cant see anything. I have not responded well, when I see someone has been taking it for 3 months and basically has full re growth Im dissapointed its not really working. Has anyone tryed other RA drugs and had better results?
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How are your nails. Has xeljans help with your nails. I have had Alopecia for a long time but just recently started to have nail issues. My nails are brital and crack/split done the middle. Xeljans has helped but they still crack. I hope maybe after a year my dose my increase simply to strengthen my nails. I often overlook my improved nails by just focasing on hair. I hope this helps.
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