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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 Frida Rupert on
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That's an awesome result! You'll have to post a pic when you feel comfortable enough. Very happy you are seeing such great results so quickly!
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Will do! Right now I have a patch front and center and have basically no growth going on from 3 inches above the ears down. Crossing my fingers that this works! I'd post a before pic but am too self conscious. Maybe ill take one and share with the after if xeljanz does the trick :)
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Ha ha- don't worry I was too self conscious to take a before shot. Once the growth started I got more confident! It will be exciting to see your progress once you are ready!
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it makes me laugh people give their news when their hair falls but when we ask for news there are more people I speak for most not everyone
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I am still having pretty amazing growth on the scalp and it seems that my eyebrows have stopped falling. My beard is still falling out like crazy.
I am worried though because Everytime I put on cream on my head I notice hair on my hands. It's not a lot but I must notice 3-5 pieces of hair splinters on my hand. It worries me. Should I be worried? It's not Everytime but I'm wondering if it's just weak hair that xeljanz helped grow and it's breaking off from me rubbing it...
It's not nearly as much when I first got AA.
So worried.
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Totally understand Newjack- this condition is such a mind spin. I think you are progressing in the right direction but it might be a case of your body just being a bit confused. In the long term I am confident you will have a full recovery but it maybe a bit of an up and down journey as your body is still going through a transition- you are so new to alopecia- I think your body was probably going AU but xeljanz stopped it before it did- but some hairs were already in resting phase so they are gonna come out before the new ones grow. Stay strong!
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So weird. It's not much I also shaved my head Sunday night and am wondering if it's just loose hair stuck on my scalp or if I'm picking up loose hair on my pillow or hats. But after I came out of the shower and dried my head I put some lotion on all over my head I saw like 4 stubbles on my hand. I know not much but it's basically PTSD St this point.
I rubbed my head before and got another 2. Did a pull test on some stubble and got nothing.
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I'm finally getting my first 3 months of xeljanj and was super excited until I got sick last week. Luckily, I hadn't even started it because I now have the flu and pneumonia. I'm beginning to feel better but can tell you I have never felt this bad for so long. I have a small equestrian center where I raise, train and ride jumpers competitively. I have always had a very active lifestyle and I can't afford to get sick like this. This is setting me back weeks.
Since I've been bed ridden I've been obsessed with the videos about autoimmune diseases. It all makes perfect sense and I've always believed we can repair our own bodies naturally, given the time, tools and fortitude. I haven't been able to eat much more than soup and I feel like my body is a clean slate now so I'm going to try sticking to the rules for fighting this disease by eliminating inflammation. I have started filtered water, gluten free, dairy free and sugar from fruits. Along with about 25 supplements a day. I'm AU, not a hair insight for at least 6 months. I used to have peach fuzz but that has gone too. It just seems like from everything I'm reading the xeljanz needs to be taken forever. I'm 67 and since my family has longevity I could easily live another 25 years. I'm torn now with because I want to be healthy. With or without hair, I've reached an age where being able to enjoy my family, ride and feel good is more important to me. I can say that if I were in my 20's or even 40's I would sell my soul to have my hair back. I know healing this body that I've always took for granted, is not going to happen overnight but I believe I can.
The big question is, am I going do irreversible damage by taking the xeljanz? I've noticed that when I did the steroid shots I had growth but it was short lived and it seemed like the attach got even worse. Does anyone know of anyone thats been on it for 5 or 10 years? Of course, after feeling so poorly for the last week and still feeling very weak I am reevaluating taking the xeljanz. I'm never going to feel like my old self again, until my hair comes back but I do have good days and I'm accepting what I can't change. I appreciate this forum and all everyone contributes. It's helped my a long the way.
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I've been on immune suppressors for 17 years and haven't had adverse reactions aside from more frequent upper respiratory infections. I was previously on humira and was ALWAYS sick with something, including having pneumonia for the first time. If you feel that much worse that you feel the risks outweigh the benefits, I would stop. I have a few autoimmune issues so I feel the recurrent sinus infections are worth the benefits I get from the immune suppressing medications. Best of luck :)
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I should also add that after quitting any immune suppressor, in my personal experience, the disease comes back with a vengeance. Even with pregnancy when my conditions went into remission, my issues came back hard and fast and worse than before, unfortunately.
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What kind of immune suppressing medications do you think? I dont think I understand what you mean. Do these suppressors stop your hair fall?
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Yes it's a hard choice to make. Personally I have been healthier on immunosuppressants then off them. Less colds and flus. I know that's weird but before I started immune suppressants I got a cold or flu every few months. In the last 12 months or so I've been on methotrexate, cyclosporine and then xeljanz and have only had one cold. I think stopping my body from attacking itself is helping it stay healthy. Totally understand if you don't want to risk it though. I have hashimotos as well, and possibly undiagnosed lupus so for me feeling better on the medication is partly why I am so enthusiastic about xeljanz and my progress- if I was constantly sick and feeling gross I'd probably be weighing it up too. You gotta do what feels right for yourself and your loved ones.
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