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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 Ahmed on
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Hello Xeljanzmiracle,
I don't know why there isn't a reply button under your comment.
Anyway, I didn't go to Turkey. My parents did a month ago to spend their vacation there. And I gave them money and asked them to bring me as much pills as they could. They went to Bursa city, it's far away from what was happening at that time, thank God. They went to a pharmacy there and they asked my parents to wait for few days to bring the pills from Istanbul.
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Permalink Reply by Xeljanzmiracle on
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I'm glad they were away from the trouble and came home safe.
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Hello Peachfuzz, I'm not 100% sure but I'm guessing yes. Because my parents went to a pharmacy that was far from Istanbul and they still managed to send it to them within few days. So I think It'll be even easier and faster to get it from any pharmacy in Istanbul.
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Thanks for that info. Do you know how long it takes to get the meds after you have ordered them? I only have a tight window to visit unfortunately
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If you're getting it from a pharmacy far from Istanbul it could take 3-5 days. But I read somewhere in this thread that if you're getting it from Istanbul it could take few hours after ordering them. If you're on a tight schedule I suggest you call the pharmacy and have them prepare the meds before you arrive in Istanbul.
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Hi everyone, this is my first post on this thread... But I have read most of your posts and can't believe how brave and supportive all of you are. It's amazing.
My situation is a little unique but I am hoping to reach someone out there who has had a similar experience and can offer some words of advice, because I am an absolute wreck.
I am a 25 year old healthy female with no personal or family history of alopecia. On May 27th of this year I noticed a significant amount of hair shed. Three weeks later I had lost nearly all of my scalp, facial and body hair. This was the scariest and hardest thing I have ever gone through. I finally got an appointment with a dermatologist, and she diagnosed me with something called "Acute Diffuse and Total Alopecia." Has anyone ever heard of this? (If anyone is interested, here is the study: http://www.sciencedirect.com/science/article/pii/S0190962208011390 ).
While the cause of ADTA is unknown, we are pretty sure this is the result of an allergic reaction I had to a hazelnut 2.5 months prior to my onset. Perhaps combined with an elevated IgE (557) a low serum ferritin (22ng... I was a vegetarian for 8 years) and maybe some stress. But who really knows...
Anyway, my dermatologist's first line of defense was 8 weeks of prednisone. That did not do much for me. I got a few light hairs on my arms, but that's about it. (Though, after reading this thread, I realize I should be thankful of these...)
At my last appointment she asked if I'd like to explore other treatment options. I said absolutely. Her response was Xeljanz, 5mg pills twice a day for as long as it takes to get growth, "potentially a year".
My question to you all is this- I know with my condition my chances of recovery are "favorable"... (I am only at week 11 after onset and the average number of weeks for regrow the in the study was 14) But I am not sure I am willing to sit around and wait to see if that is true or if this is going to progress into something permanent. Should I try the Xeljanz? Do you think there is any chance of Xeljanz preventing a recovery that I might be able to achieve naturally? Or will Xeljanz just speed things up and do no harm?
After reading so many posts of people losing their hair again once they came off Xeljanz, I am worried that my body might become dependent on it, too, or something... and maybe I should just try to ride this out without the drug...
I've attached a few photos of my condition. Photo #1 is my first visible patch. Photo #2 is what it progressed to, within about a month. I don't know much about alopecia but I am pretty sure this is not AA because it didn't really start as round patches, and I didn't scar, and it all happened over the course of a few weeks. Am I wrong to think this?
Side note, I am also using minoxidil foam (5%), Hair Skin and Nails vitamins, a Thermadome helmet, and caster oil.
Thank you in advance for any words of advice or support. This is all so new to me and I am so scared. God bless you all.
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Photo #1
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Photo #2
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Permalink Reply by Suzie on
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I am so sorry this happened to you.
I first developed AA (the nape of my neck) at the age of 15. It all grew back without anything and throughout the years I have had a small unnoticeable patch that would come and go. I developed RA after I had my second child and after a few years I was put on Enbrel. I was on that for about 10 years and then started Humira. I never really had thick hair, but never had any more patches or shedding until I started Orencia 2 years ago. I started shedding a lot and have numerous patches that I can barely cover up. I have since gotten off of Orencia and the shedding has seemed to stop. I tried to get the steroid injections and that really didn't do much. I'm afraid if I start Xeljanz that my body will somehow start attacking my hair follicles again, especially if I have to get off of it. But I really want my patches to start growing in, so I don't know what to do.
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Permalink Reply by sadele on
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Hi Katrina,
Your story sounds a lot like mine. The pictures are almost Identical to the pictures I have as well. When I first got Alopecia I had no idea what it even was. No family members have it so I haven't experienced until I developed it.
I started to get this crazy shedding out of the blue. Within months my head looked just like the second picture you posted. I was a 33 year old healthy vibrant person and have always put some value on my appearance, (not vanity). I couldn't accept what was happening so I fought it.. But it took over and I lost my hair. Luckily, it all grew back and my hair was back to normal. I was growing it out for about 1 year and bam, it started to shed but this time it took everything. Lashes, brows and body hair.
Saying I was devastated would be an understatement. It's been 1 1/2 years of dealing with this. I don't like to admit it but it has taken over my life. And unfortunately it has affected everything in it. I've been taking Xeljanz and have some growth in my head and body, but still no lashes and a random brow here and there. However, I'm shedding yet again.
The Xeljanz does work although it's incomplete. July was my 1 year of being on the medication and although I have some growth, it's not enough to go without a wig or hat. You can always DM me and we can chat more if you would like.
I know to well how sad this is... So I'm thankful there is a community of people who can relate.
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Thank you, Sadele.
I'm sorry you have had such a tough run. Were you and your doctors able to identify any possible triggers?? Do you know what your serum ferritin level was?
I just took my first Xeljanz this afternoon... Fingers and toes crossed this is what my body needs to kick start a full recovery...
I will definitely post updates.
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