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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Thanks Katrina - booked in to see my doc on Wednesday to get a script. I've never suffered acne before so this is a first (weird on my scalp???? Maybe it's the war between my naughty immune system and X?) So far acne and feeling a bit spacey are the only side effects- totally worth it to get my hair back(or even my right side eyelashes back! Very lopsided as X stopped me losing all the ones on my left side but too late to save my right -happened very quick)!
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Permalink Reply by TMB on
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Thanks for documenting your progress and it sounds awesome that it is already working for you. I have tried everything imaginabke over the past 20 years for my AA and although I have hair on my head I am dealing with the worst bout of it now in 20 years. My dermatologist said he would put me on xeljanz but I was hesitant as I wanted to wait for results in clinical trials. How can I find out more about becoming part of a study? Would you be nice enough to continue giving me feedback on your personal results. I understand research is very close to solving this mystery autoimmune conditon with this drug and the important thing with this drug, unlike all other, the hair supposedly does not fall out again.
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My opinion is start Xeljanz asap. It has not shown to harm RA users. Personally I like to think it may fight the alopecia disorder anuff to prevent it from attacking other systems or creating other bigger problems.
Having Alopecia for 40 years with little to no options made me except the problem. I didn't keep read up on alopecia. Only after getting a diagnosis of hypothyroidism did I start reading about alopecia. A study out of Tialand found thyroid problems are common with alopecia. Maybe just maybe if I started a jak inhibitor years ago alopecia would not have possibly caused other problems. Never know. Start Xeljanz if you can.
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I have mild hashimotos too. My immunologist says X may help slow that too! Here's hoping! I'm hyper at moment - so skinny- but X has stabilised my weight so I "think" maybe it's helping!
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Thanks for your reply Frankie. I will investigate with my dermatologist who is wiling to prescribe it. Good luck to you!
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Permalink Reply by Rascalx2 on
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TMB if I knew what this alopecia was when it first started happening to me and knew where it was going ...AA to AU in a matter of 2 weeks, i dont think xeljanz would have helped because it has to be in your system for months before it actually starts working, knowing this now if I was in your shoes and it was falling out I would attempt taking it.. it may be easier to keep from progressing with xeljanz than tryin to grow it all back after its gone. Everyone is different, but I wouldnt wait, when I first got AA i figured it was some weird thing and would just grow back waiting just made it worst, but I didnt even know what to do.
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By the way zeljanz has been very good for my ulcerative colitis... xeljanz may be a treatment for colitis soon, I believe the startin dose for it is 20 mgs, which is what I am taking, so it has been working for two autoimmune issues. Just got got blood work back and everything is normal. I was very scared to take xeljanz , probably had it in my possesion for 2 weeks before I started taking it. You are not alone!
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Frankie...this condition frankly is like cancer of your hair. I hated looking at my thinning hair everyday when I woke up so just yesterday I finally took the plunge and purchased a hair piece topper. It nakes me look better on the outside but inside I know I am just covering the inevitable. In the past I was very responsive to the steroid injections but with this bout not at all. I hate meds to begin with as I am more holistic but am so interested in the xeljanz because I feel with this drug, so they say, once it is stopped the hair does not fall out again. I shoukd have tried it months ago when my dermatologist said he would give it to me but I was hesitant due to side effects. Which brings me to my question for you, do you experience any side effects with the drug?
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I have no side effects. It has also made my nails stronger. Overall it is an improvement. I have heard after ones hair grows back, dose may be reduced; but hair falls out after one stops xeljanz.
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I had attended an outreach session sponsored by FDA last week. I know it is not directly related to the use of Xeljanz, but thought you all may find this interesting.
Thank you for attending the public meeting on Patient-Focused Drug Development for Alopecia Areata last week! FDA collected valuable information on alopecia areata, the impact it has on patients’ lives, and patients’ perspectives on treatment options. We truly appreciate the courage, effort and time invested from everyone who was able to attend the meeting in person or on the web.
We know that not everyone who wanted to come to this meeting was able to attend. For anyone who missed the meeting or is interested in what was discussed, we have posted the meeting slides and a full recording of the meeting on our website: https://www.fda.gov/ForIndustry/UserFees/PrescriptionDrugUserFee/ucm554443.htm.
In addition to the input we gathered at the meeting, we encourage individuals with alopecia areata and other stakeholders to submit written comments to the online public docket. The comment period closes on November 13, 2017. Submit your comments through this website: https://www.regulations.gov/doc ument?D=FDA-2017-N-3067-0001.
FDA is particularly interested in hearing patients’ perspectives on the discussion questions outlined in the Federal Register Notice that announced this meeting. These discussion questions are also pasted below for your reference.
Again, thank you to everyone who attended the meeting! If you have any questions, please email PatientFocused@fda.hhs.gov.
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is there any progress? whats the general view now?
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