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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 Joja101 on
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Would like advice if anyone can offer some. I've been on Tofacicitinib from Beacon for 5 fulls months. 1st month I took one 11mg per day and the last 4 months I've taken two 11mg pills per day. Still don't have any new hair to show for it. I see Dr. Bordone in NY but I'm down in Florida so it's difficult for me to go during the week to see her. Should I add something or up the dose??
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Joja101 , I had a hard time responding at first and Dr King suggested a prednisone pulse and it really helped me to start seeing some regrowth. I saw results within 3 weeks .
Maree425
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Hi maree. What dose prednisone did dr king suggest and for how long you took it for? What’s your dose on tofa and how long before you started prednisone did you stay on that dose without response ? Thanks
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I took 15 mg a day for 6 months with very little results, then added 300 mg of prednisone in one dose , once a month for three months and saw results three weeks after .
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what dosage?prendinedone?
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Joja- it can take ages to get going - I wouldn’t give up before a year at a minimum. Also, a steroid pulse often kicks it off. I didn’t respond until 5 months and a steroid pulse. The thing is with hair is everything takes a very long time- the hair cycle is 3/4 months so if you are shutting down an active attack and/or have had follicles which have gone dormant it will take a few hair cycles to get going. I’ve heard of response kicking in at 8 months to a year and the person still getting a great result.
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Do you know people who took 12 months? My doctor (Bordone) encouraged me to stop with Xeljanz after 2 months since I had no results.
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I personally took 5 months to get a single vellus hair and had to go to 20 mgs and steroids to get going. I now have a full head of hair- thicker then pre-alopecia. In the initial trials there was a guy who took 8 months to get a vellus hair and ended up with a good result at 18months. Recent studies are reassessing and saying a minimum of 6 months is needed to see if there is a response - any response.... I would double this based on experiences I have heard about with response coming at 8 montages plus. The thing is- a hair cycle is 3 months minimum - that involves the hair forming from the follicle - the hair that is visible started 3 months ago in the follicle. If the user needs to have the inflammation over come prior to being able to commence the hair development then that blows out the timeframe. That’s why when you commence hair loss treatments like minoxidil the package says results may not be visible for 6 months. Bordone is a great doctor and it seems odd, given information I have had from other patients of hers that she would recommend stopping after two months.
My personal belief, which is increasingly being shown via new studies and personal
one on one discussion is that jaks take time to work- some need very little time and dose to get response others need ages and high dose. A friend has gotten response on Ruxo, known to be faster and stronger then tofa, at 8 months (on high dose) and is well on her way to full regrowth. The issue with all hair loss/growth even without the presence of autoimmune disease is time....
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Permalink Reply by Lindzzej on
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Hi Frida, you said you had a friend on ruxo, do you know how they attained it? Do they offer an assistance program like pfizer does w tofa? Interested in making the switch potentially but my derm doesn’t have any experience w ruxo. Thanks in advance!
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Hi there - I think I am the friend Frida is referring to :). I was extremely lucky to have my insurance cover the ruxo, as there does not seem to be an assistance program for it and it is much more expensive than Xeljanz.
I did have to make a case for myself with my insurance company, but with doctors' letters and a literature review I managed to persuade them.
I do live in Canada which helps - I think the general attitude towards healthcare is also manifested in insurance coverage.
Where do you live?
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