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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 Rascalx2 on
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Having bad day today..some pics from hair days came up on the computer slide show, It brings such a feeling of despair and sadness. Life has such a bizarre sense of humor- I have unlimited access to xeljanz from insurance, I am trying to accept I am a non-responder at this point. Been on xljnz since july, up to 20 mgs for weeks, I have some peach fuzz on head and weak,white sideburns....thats it! still smooth and bald everywhere. I constantly come to this place of reality that I will look like this the rest of my life, and it just downright hurts. Sometimes it can be so inescapable to be trapped with this alopecia....was thinking of when overwhelming stress "turned something off" in me, I know that was what caused this alopecia, If only there was a way to "turn it back on"...needed to rant a little.
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Permalink Reply by sadele on
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I completely understand and relate to these bad days.. keep hope and faith, there is a breakthrough in treatment. Where do you live?
There is a clinical trial starting with Jack 1&2, which is similar to the drug Jakafi. For those who are no -responders or incomplete responses to Xeljanz, the other Jak inhibitor has a good chance of working. This is from my conversation with Dr King. Look into it, the pharmaceutical company is called Concert. You should be able to find one close to where you live.
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Permalink Reply by James 2me on
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It's not easy dealing with this but after one year on xelljanz some growth then shedding I am now 4 months off Xelljanz I am actually starting to deal with it very well I had the tattood eyebrow procedure they came out awesome I also feel really healthy and stronger after stopping Xelljanz if it's any help to anybody the photographer at my daughters wedding a month ago noticed my eyebrows and went on to tell me that she also had them she was a beutiful women around 40 years old we got talking it turned out she went AU twice but currently had a full head of gorgeous hair she told me not to listen to anything you hear or any doctors. That stress is the cause and until you let go of it and learn to accept you're hair will come back weather that's true I couldn't say but right now that is how I choose to live and I really feel good and positive good luck to all this is not easy on anybody but have hope as far as the concert pharmacy trials go there is one enrolling now at Mt Sinia hospital in midtown Manhatten the other 2 upcoming trials will be held at Columbia hospital in western Manhatten the third is to be held at Yale also the medication is expected to be available in 2 years it is A Jak 3 inhibitor.
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Hi James, can I ask what made you give up on xeljanz ? I know the feeling as being on a jak inhabitor for years can make you think if it's harming the body and mind.
Kind regards
Singh
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I often feel if I got to a place of complete acceptance the hair would grow back, maybe wishful thinking, But Im trying hard to not get mugged in that dark alley of my mind
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I feel there is every hope us alopecia sufferes will get the treatment and hopefully cure we deserve.
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you have 3 options
1.you stop xeljanz 20mg and you try to go in another clinical trial. there are a few now in the US.
2. you take SERIOUS high dose of xeljanz. no I don't recommend this. but did this work for me? yes. not full head but I have full eyebrows and lots lots of hair after 2 or 3 months. I was AU for 10 years.
3 you find another biologic and do it. there are.
it's the what ever it takes mentality
I tried 7 months of low dose xeljanz without results. Dr told me to stop. but I was not able to look at myself... even after 10 years. hardcore situation requires hardcore option. stay strong buddy
me too I was told by the best Dr that I was a non responder and that I'll never have my hair again. but I refused to believed it. the Dr will live a happy life after our appointment. the patient is the one who stays living with the disease. it's a sad life sentence. I had to find a solution.
whatever it takes
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Hi Rascalx2 don't be discouraged have faith my friend. If you live in the US there is a trial on a drug called ctp-543 you could enrol said it is a jak 1 and 2. Think the details will be on your government trials website.
Kind regards
Singh
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Singh. I just knew the hair that was comeing in was not going to ever materialize to my real hair it was patchy and what did come in was starting to shed. On top of that I was getting mixed feelings about all the possible side affects along with not feeling like myself so I just made a decision to enjoy life as I am that was my personal decision but on the other hand I can't blame anybody else for giving it a try this is a life changeing Disease that will make any one of us try something good luck to all
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I understand James, I just feel accepting it is one but at this stage with the progression being made its possible a treatment will be out by 2020/2024. That's what I feel.
Keep the faith mate
Kind regards
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Wow had the same kind of day yesterday.I have tried xeljanz with every combination and strength and nothing.I have several bottles sitting in my cabinet right now I'm still taking,afraid I will loose my eyebrows and lashes if I stop.Ifelt so desperate I made an appointment for Tuesday to get fitted for a new wig,was hoping to be done with them.Here goes another 3,000$ I just want my own hair back.I know there are new drugs being tested but I feel like their so far away from ever getting approved.Sometimes I wonder what's wrong with me that my body won't respond to anything like everyone else maybe this is how I will go through the rest of my life!It has been several years since I got AA and I feel like it has taken over every minute of my wakened hours.
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