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 Juan on
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I dont think I will do it forever. I am going to be honest, I will try it and if it works I will just drop it progressively, if hair starts leaving me again I wont care.. Thats my position now
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Personally I am staying on it until I feel mentally prepared to reduce dose. I hope to be able to maintain growth on the lowest possible dose. Many people can not reduce it but their are some that need the medication to induce remission and then keep their hair after weaning off. My doctors have told me that there is a percentage of people who can come off treatments like methotrexate and cyclosporine and keep their growth. I think it is based very much on whether someone’s system is hardwired a certain way and the potential that preexisted for remission. It seems inducing remission is often the hardest part- but I think the majority need continuous treatment.
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Thank you Nicole - it’s frustrating to have people assume we are not careful with our health - most of us take better care of ourselves then others without this condition. But alas, again, the assumption is that somehow - through not living a “holistic” life we are cursed with a non- remitting immune condition- I think that is false. Countless forum members have documented the holistic diets and alternative treatments we all placed so much hope in before trying toficitinib. They didn’t work for us (many tried these methods for years) for many of us this medication has- most of us have coped well with minimal side effects. It’s blaming us more extreme cases for this condition which is unhelpful and untrue.
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Permalink Reply by NicoleT on
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Yes Juan thank you for that.
My doctor and this medication are a GIFT to me after so much searching.
I am so thankful!
I've thrown away all my wigs and I am just rocking this loco hairstyle and loving it because i have hair yessss!
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I am very happy for you really!
And you should definetely rock that look of yours, Looks awesome
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I could not agree more Frida.
OF COURSE we would all want a holistic and natural approach!
I don't even take pain meds with my period or a headache.
Would any of us chose a drug that happens to be extremely expensive and insurance companies will not help us? Of course not.
For one year I did not consume a single legume, grain, nut, seed, egg, dairy, sugar, caffeine, alcohol following a to the letter auto immune protocol diet.
I tried every single supplement for alopecia that you can name.vitamin D therapy,
Bone broths, pro-biotics, collagen, gelatin, essential oils, accupuncture, yoga.
For years. To no avail.
None of this worked for me.
Losing every single hair on your head, face and body is a traumatic and devastating experience for the person and their family and effects ones job, personal life and relationships.
Anyone who thinks any of us just haphazardly started to take some easy cure all pill is ignorant; judgemental and as you said, is belittling our experience.
Finding xeljanz was nothing short of a GIFT after tireless research, meeting with every sort of doctor you can imagine from holistic healers to endocrinologists.
I was on my knees and through a chain of event FINALLY found a doctor compassionate and with a breakthrough medication that can finally help some us.
For anyone to come along and think that we don't know anything about the drug. please. I have spreadsheets full of information on this condition and this drug and all its trials. Ive dedicated years to researching it and trying to heal myself. This is how I found out about JAK inhibitors and THANKFULLY its working for some of us.
I feel extremely grateful to live in proximity to a doc that can help me and have the means to get the drug.
This is why I want to be here to help anyone on here that I can with any information that I can pass along.
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hi nicole do you think that the tofacinix cachet of 5mg ..
has the same dosage as xeljanz. because you mentioned that the laboratory did not perform the assay. because it may be less dosed?
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I do think it’s the same quantity.
I find them to be a very reputable pharmaceutical company.
I know in the past for medications I’ve been on such as Synthroid doctors have advised that sometimes the generic dosage can vary slightly where is the name brand is supposed to be more spot on with the Dosage.
But for me I am progressing the same on the generic as I was on the name brand so I have no reason to think that the dosage is off and if it did vary slightly pill to pill it would be very minimal. I would say this will be the same case once generics are available in the states.
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hello nicole, the analysis in the laboratory of tofacinix, you bought it on this site
https://www.beaconpharma.com.bd/ ?, because at the beginning you talked about tofacinix in india, while beaconpharma is in bangladesh.
I bought a box of tofacinix in india, but I saw that the price is cheaper in bangladesh
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Permalink Reply by Patrick on
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Hi. I’m thinking also of taking this drug. Apparently for those in the UK with Alopecia, it is available on the NHS to treat another autoimmune disease called Rheumatoid Arthritis. I’ve contacted my Dermatologist to see if would be able to treat me with this drug on a very low dose to start with and with close monitoring.
So it seems, it’s licensed here in the UK. This gives me some hope now as has probably undergone the necessary measures to become licensed. What sort of dosage should you have and how long are you meant to stay on the drug?. Does it have to be months and can it be just a short time to improve things then stop? Be interested to hear your thoughts on this.
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