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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 Patchylatchy on
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May I ask is anyone afraid of cancer being on xeljanz? I'm on 10 mg a day and althought I'm happy I'm taking it I'm bit scared too
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Yes, I am. Ive been on xeljanz for 3 years and im VERY nervous. I hate to stop because I went from being almost bald to having some nice med length white and gray hair. What a trade off. Scary
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Hi everyone! I was wondering if anyone here is located in Canada? If yes, how do you get your supply of tofacitinib? Did you manage to get it covered by insurance, pay out of pocket, or find a way to get it into the country from Beacon? I'm finally ready to start taking tofacitinib but I don't know how to get it in Canada with such strict importation laws, i also don't want to pay out of pocket, and I've heard its hard to get it covered by insurance (and its a long process). Any advice is really appreciated! Thanks!
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Permalink Reply by 3ebdie on
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Is this topic still active? Been on Xeljanz for 7 days now and I actually experiencing headaches everyday. Any one here with the same experience at the beginning of taking xeljanz? I am on 5mg twice daily by the way.
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Permalink Reply by Fingers_Crossed on
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Hi 3ebdie,
I had the same thing. I also had crazy increased hunger but it wore off after a few weeks. I also experienced diarrhea for a couple weeks when I increased my dose from 10 to 15mg. My doctor told me side effects are usually worse at the beginning so hang in there.
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Hi guys,
Are you going to get Covid vaccine when available? Is it going to make AA worse? I would like to know your opinions. Thank you
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Hi Nat,
I’m torn about it. I want to see what vaccine gets approved here in Australia, and whether it is a “live” vaccine or not. Typically I am pro-vaccine, and will probably get it when available, but recent news stories about people with allergies having issues (this may not be accurate - it’s still such early days) does cause me some concern - given autoimmune disease is an allergy to ones self....
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I am also torn - I did hear that some COVID vaccines are not live (the MRNA ones), but I am not sure if that means they are safe for us... I know in the xeljanz pamphlet it says something about vaccines, and I believe it is along the lines of consult your doctor before getting it. I'd be interested to hear what you guys end up deciding to do once its available.
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All the vaccines (Pfizer/Biotech, Moderna, AstraZeneca/Oxford, Jansen) till now are not live. They aim to trigger the creation of antibodies and t-cells against Covid-19.
I am confident that the vaccine is the way out of the pandemic, and I do share the concerns about the vaccine and alopecia. Considering the very expedited trials and the lack of extensive long term studies, we are kind of in a live experiment.I live in Europe and with the current (very optimistic) plans, I will be able to get the vaccine (the not yet approved AstraZeneca or the not yet phase 3 trial concluded Jansen vaccine according the published plans) in Q3 of the year.
I wish we know more about the vaccines by then.Edit: Found this high level article (not scientific, yet legit enough) https://www.forbes.com/sites/jvchamary/2020/11/29/coronavirus-vacci... . Codagenix and the Serum Institute of India have a live vaccine under development actually.
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Hi Frida,
I got my first shot yesterday ( Pfizer vaccine). Fingers crossed.
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Yes, most follow still and contribute once in awhile. Headaches I think are a side effect but a lot of the side effects ease after the first few weeks. I had a gurgling stomach, acne and weight gain initially and after a time these went away. If your blood work is ok I would encourage sticking with it, the result (often takes a long time to get started) is well worth it in the long run.
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