Alopecia World
www.alopeciaworld.com
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.
-----------------------------
AW: Other discussions on Xeljanz / Tofacitinib
https://alopeciaworld.com/main/search/search?q=Tofacitinib
Replies to This Discussion
-
Permalink Reply by Toxicmosquitoaf on
-
I am shocked at everything that ur taking... is it worth risking your life for hair?
-
Permalink Reply by Frida Rupert on
-
- For me it is. The most dangerous part of my regime is the steroids by a long shot. This is a temporary measure and if my bi monthly bloods show any problems they will be stopped. low dose naltrexone, minoxidil and Allegra have extremely safe long term profiles. The Chinese serum is a product made of of butterfly pea. I have included links regarding the use of steroids and xeljanz in studi s which showed few serious and/or long term side effects.
- I have a major phobia of losing hair, prior to this happening due to a childhood friend losing all their hair when I was young and never having it explained to us why this happened. It didn't change how I felt about her but I saw how devestating it was. Now I have felt it first hand and I think the physical dangers for me are far less then the psychological dangers on my long term quality of life.
- i have a reasonable tolerance for medications- I was on methotrexate prior to xeljanz and I actually felt better on it - healthy, perfect blood results, no side effects, same with cyclosporine and prednisone
- my only serious side effect to date is weight gain and mild heart burn. These are a walk in the park compared to living with AT for me as an individual.
- i don't recommend my regime to anyone but I am honest about what I am taking and why. Some people seem to cope really well and adjust easily. I admire them greatly but this, research and aggressively treating this disease, is my way of coping,
-
-
But you still dont have full head of hair. How do you feel? What will you do if u never get full head of hair? Will you up the dose or? Whats ur diet?
-
-
To be honest I'm very happy with getting my eyelashes and eyebrows back- 100% and that's already made a difference in my life and outlook. While my hair is now fuzz which is turning brown in a few places I still find that easier then having absolutely nothing on there. When winter comes it will keep my head warmer at night. I will be sad if my hair doesn't come back totally but tbh in some ways I already feel so much further along then when this process started. My diet has ranged from paleo, AIP and keto. Keto wasn't for me as dairy is not my friend. Currently I'm on whole 30 which is a slightly stricter version of paleo which I find suits me best. I don't drink or smoke, do any illicit drugs ( not judging though - if that's your thing) and am very careful taking any painkillers, antibiotics and other medications. Outside my current regime my worse habit is coffee- I'm an Aussie- we love our coffee over here. I exercise regularly ( cardio - up to 30 mins a day, hand weights 4 x a week, stretches and sit ups daily). I also do a lot of walking with my three dogs and two kids. I am reasonably healthy - my blood pressure is significantly lower on xeljanz then prior. I have been AT/ AU since august 2017 with the first patch occurring late dec 2016. I won't up the dose as I am now seeing good progress. If it continues growing as it is hopefully in six months I'll have a pixie style, if not then at the very least my eyelashes and brows are back.
-
-
I respect the things that you are doing and the dedication of getting hair back. I hope u are not offended by my straight forward questions, I just want to get to know you better.. My concern is just that this drugs are only temporary and I hope you wont have any health problems.
@Newjack.... ohh really.. it takes time? Oh my god tell me more?.. Cmon bruh I have been reading this post since the day one.
-
-
Frida, I don't have alopecia but my 18 year old son does. Got it when he was 17...and if he wasn't responding to Xeljanz as prescribed I would suggest he follow your regimen.
-
-
Thanks Christopher's mom,
Your son is blessed to have such a supportive mamma! At this point, given there is loose genetic link to autoimmune disorders, and given my experience it would be a route I would feel comfortable supporting my children to go down if god forbid this happens to them. I think it may come across as quite radical but I am following the structure of the studies undertaken by the experts so far, and using well established treatment modalities, while also going through a reasonably rigorous monitoring process. If my fortnightly bloods came back with any problems we re-evaluate dosages, or stop using the pulsing etc. I am looking after my body in other areas, sleeping 8 hours, exercising, eating healthy ect to try and offset any damage. The most risky aspect of my treatment is the steroid pulsing but steroids have a long history of use (in higher and longer doses then I am and plan to take) in other immune disorders with relatively good outcomes and are often used alongside other immune suppressants successfully. Part of the reason I sought out an immunologist as opposed to a dermatologist was that I wanted this treated as an immune issue because it is my understanding that that's what it is. My immunologist specialises in immune disorders and when I show him studies he understands the terms, the different statistical results and the special chemical processes with amazing fluency, even though I am his first xeljanz patient.
i was actually hesitant to detail my process in public because It's a bit upsetting when people think you are doing looney things to yourself, like you have no respect for your life, I do, which is why I researched extensively before coming up with my regime in collaboration with my doctors. I also am closely monitored by my specialist and gp. In the end however, I think information and sharing our successes and failures is helpful in the long term in helping people make informed decisions about treatment. I don't want people to willy nilly copy my treatments without consideration to their own situation. And I really would not recommend it if you don't have close monitoring, but I do want people to have access to information and experiences that help them decide. If my experience helps someone else recover or make informed choices I think that's a win. That's what I found on this site. Information from people who have lived this, like the information you have shared about your sons treatment, and it has helped me so much.
-
-
Being AU is not living a life for many people. It's a nightmare for many.
Psoriasis patient risks their life with same medication for red patches on skin.
Professional athletes takes anabolic and pain killer drugs for performance.
And all The Flyest had to say was to pick on a women who wants her on own hair...
I lived 11 years with AU and the last year I was on xeljanz with good regrowth. I saw the 2 sides. I choose the hair side EVERYDAY. I had the best year of my life on xeljanz.
-
-
Thanks Retun to Life. Glad you understand! I totally respect people who can accept AU and AT and decide to not have treatment and admire them for this but we are all individuals and all cope with this in the best possible way for our own personal mindset! Just hope that they, if not understand, perhaps accept that we aren't all gonna deal with this in the same way.
-
-
I am not picking on anyone.. I lost all my hair too. Just asking her honest questions bro
-
-
Ok so let me ask u a question.
Where all this 'hate' for xeljanz and other immunosuppressor is coming from?
I worked in the pharmaceutical field and immunosuppresor have been gold standard for autoimmune diseases SPECIALLY in Europe and North America for the past 15-20 years.
Am not bashing u bro. I worked specifically in the immunology department. Sentences like it's only hair or bald is beautiful aren't helping for new treatment. Alopecians are 10-20 years behind others autoimmune diseases because it was not judge as important.
To me it has nothing to do with hair on my head. It's not to look like a freak (talking about AU)
© 2024 Created by Alopecia World.
Powered by
