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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 Fab on
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Now that I think, every time I had to do an anesthesia the status of my alopecia worsened, and it all started when I was 15, a year before I had to make two anesthetics (apendicite and wisdom teeth) ...
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Does anyone else have nail pitting? If so did this resolve with regrow th in xeljanz?
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Permalink Reply by Jcortez05 on
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I didn't ..my nails did look like they have slight ridges going down vertically .. Very faint
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I also had the slight ridges almost unnoticeable but I also had a sudden onset of AU it was fast and came on suddenly.
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Yes mine were very pitted and now they are all clear since taking Xeljanz.
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My toenails were paper thin and would split right down the middle didn't even go for a pedicure to embarrassing now finally better.My finger nails use to be super strong and they also broke easily now I have a gel base and gel polish put on.They might be better too.
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My nails were so thin and damaged that it was painful to reach into my pocket or do anything involving my nails. They are fine now, but I took a while for the damaged part to grow off, Good luck.
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Hi,
I'm new on this forum, I will try to show you the my wife story. My wife is 42 years old, she has the alopecia from 10 years. The last 4 years she has AU. I have tried all for her without success. First SADBE and from 10 months steroid creams: kenacourt + sicorten + diproplene + vitamin D (dottor krebs method). Nothing.
We have a son 12 years old and he never seen my wife without wig, he don’t know that his mother don’t has hairs (pheraps…), my wife is scarred only to think it. I love she so much that I will go everywhere and I will do everything to see my son stroking her mother's hair.
This forum is my hope. I have found it some days ago and I have read all topics with all pages. I see it all days to find good news. We are italians, here there isn’t Xeljanz, I would like to go in Turkey to buy it but I should do it without a doctor that follows my wife. I think that this is dangerous.
Please, help us, help my wife.
Andrea
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Welcome, Angeand! I'm glad you found this forum. It has given many of us hope. I agree that you should have a doctor follow your wife when she starts taking Xeljanz. Hopefully, her doctor will agree to order and read blood tests for her to make sure she is not having any adverse side effects. Good luck!
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Thanks William for the Article it pretty much sounds like where I am. 4 months I have facial hair nose hairs starting to see several small hairs on legs and arms. No scalp hair or eyelashes some signs on the eyebrows. I guess I should remain patient I was hopeing to see scalp hair started useing rogaine twice a day this week
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Met with Dr King today who is such a kind wonderful man. My son is AU for 3 years and 14 years old. We've met with him two other times before this. Looks like we will be starting the prescription during early July. We have to submit a hardship application to Pfizer. He seemed to be very optimistic, where we are all basically very guarded as we don't want to get our son's hope up. Am I wrong in assuming if we were to experience results it would start with eyelashes and brows? After reading all these kind posts it sounds like everyone responds differently. We never see our son without his cap on so that will be a challenge.
Thanks for all the support and updates and good luck everyone.
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