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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 Patchesforlife on
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Hi adml. Did celjanz work for you?
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Permalink Reply by AlopeciaDestroyedMyLife on
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Hi ,
Xeljanz overall has worked wonders for me . However I have not managed to get everything back as of yet around 80% . I had most growth on 15mg a day but have to stick to 10mg because of cost.
I will be getting Olumiant (Baricitinib) shortly and am very interested in seeing if this new medication will stimulate the more stubborn areas.
There appears to be different variants of alopecia which explains why some people (roughly 20%) have not responded. The majority of people will see growth.
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I want to Thank You ADML for starting this thread.I have learned so much from everyone but most importantly that I am not alone and there are people out there just like me struggling with this condition and doing everything in their power to beat this.I got AA later in life and had so many stressful life changing events in my 20's and 30's that could have triggered it but didn't.I did develop a thyroid condition and had a hard time feeling better till I went on a natural thyroid pill then a couple years later there was the day when I saw all that hair on the bathroom floor it wasn't spots for me but diffused.What am I most thankful for is that I still have enough eyebrows and lashes that when wearing a wig (which is always)I look normal. A couple posts ago someone said they got eyebrows and lashes but no hair and was giving up xeljanz I was very surprised. I decided to try 4 pills a day for at least 5 months a last ditch effort.One of the first signs before the hair on the floor was I didn't need to shave my legs so often and eventually lost all my leg hair.Since starting the 4 pills a day almost 2 months now I am starting to get leg hair almost at the point where I would shave it still kind of fine!I can only hope this is the start of something but will not be able to stay on that dose to much longer.I am hoping for barcitinib to get approved don't know what the holdup in the U.S. is or what the price will be. Keeping my fingers crossed that it will be the answer for all of us not getting good results on xeljanz.Thanks again to everyone who posts on this site.
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ADML, Please keep us posted as to your progress on the baricitinib.
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Hi ADML,
Thank you for standing up for us, the autoimmune alopecians, in your previous post. Only those who experienced the nightmares of autoimmune alopecia themselves, or whose loved ones had this condition, can understand what we go through.
Happy to hear you have 80% of your hair by now. Hope with the Baricitinib you will get all 100% of your hair back soon. Please keep us posted on your progress.
Special thanks to you for starting this thread. It has been a great source of information and help for many of us.
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Hi ADML,
could you please share with us how and where you get Olumiant?
I know is available somewhere in Europe (Germany for instance)
but then, do you need any prescription for it? Is Dr. King supporting
you to try with that? Kindly let us know about that and if there is
any chance to get it and where. Thanks for your pioneering exploration
of (even partial) solutions for our troubles...
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This Book help me a lot in regrowing my hairs. You can try this too http://bit.ly/hairlossblackbookS
It helped me in growing mine. Hope, it will work for you too.
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Follow up report on my 17 year old son who is 11 months post beginning of AA, 10 months post AU heading toward AT and has been on 5mg Xeljanz twice a day for 5 months.
Despite the hot weather he still wears a hat and I have not seen his head since last April which was during an office visit with his dermatologist that showed great, yet patchy, regrowth of long hair on 50% of his head.
Lately my son had been bringing up getting a close haircut prior to beginning college in August and had been inquiring about my hairline. That is all the info he would provide to me...he never wanted to discuss his hair except to recently say he has a few bald spots on his head that are bothering him because he has hair everywhere else on his head. Hair is beginning to grow on his legs and possibly his arms. He has eyelashes and eyebrows which he was beginning to lose prior to Xeljanz.
Per the doctor, since I wasn't in the room for this visit, my son "has a full head of long, blonde hair with a few bald spots on the front and back." (Dark blonde is his natural color.)
He has acne of either a bacterial or fungal nature to it because of the Xeljanz. He was prescribed oral antibiotics for which the dr will call in a month to see if it has cleared it up. If it hasn't he will be prescribed medication for a fungal form of acne.
He was given cortisone shots in the spots that are slow to grow in, for which the doctor said those are the areas that are the last to fill in.
Doctor brought up weaning off Xeljanz but not how to go about doing it or exactly when it will happen.
I have prayed for my son to have the opportunity to begin a fresh start in his life through college with a full head of hair and clear skin as nature intended and his body rejected. Looks like it is going to happen.
For all of you non-responders, keep up hope. The medical breakthroughs for this previously misunderstood and terrible and disease has happened. Though I understand for an individual without hair and the impacts it has on their life, time can move slowly. But it is happening...it really is.
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You are great. Thank you for your words. They make us hopeful.
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Of you don't mind. I live in Illinois. Can you let me know which doctor do you see?
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Hi Patches.
My son sees Dr Vanderweil at Northwestern. Northwestern has a hair loss clinic and a couple of doctors who treat alopecians. In January they started enrolling people in a double-blind study of a drug different from Xeljanz for alopecia. If my son wasn't responding to Xeljanz I would get over there yesterday. Because it is a double-blind research trial there is a 50% chance of getting the placebo and a 50% chance of getting the real thing. Also, since it's a research trial the costs for the medicine is $0.
Northwestern, or at least Dr Vanderweil, is very familiar with the process of appealing insurance companies who have denied paying for it. In my son's case the appeal worked and we are now covered for 6 months for which time we have to appeal again.
Best of luck and keep us posted!
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Thank you so much! Very useful thank you
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