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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 cardiganblues on
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I did it in a stupid and risky way. But I just had this feeling about it. I'm tethering the line between courageous and idiocy. My hair standing that way naturally is a good indicator for how fucking demented I am.
I will PM you and tell anyone else how I did it. Not selling anything, just wouldn't recommend how I did this to anyone unless they're insane too. Frida, I see you post here all the time, so you especially I would love to give info to because you're so dedicated to learning all you can about this :)
I only spent 250 euro on it. Haven't ran out of it yet, still have about 3 months supply left from the one I got in December. It's lasted me the whole 8 months. It's looking like a year supply tbh!
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I have friend requested you. Please PM me information on how you got baricitinib. Thanks.
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Thanks cardiganblues! I would love to know about it.
By the way I’m sending this picture after 7 months xeljanz + 1 month 1 week on prednisone, I had nothing for 10 years.
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How much are you taking again?
It's working so you have nothing to worry about! This is great. I'm really happy for you. And you aint reckless like me. It's coming in nice and even too.
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I totally understand going rogue. I was lucky I had a very supportive doctor and family and friends willing to help me get access to affordable options. If I hadn’t I would have tried to work out a rogue option too. I do think the jaks will become more accessible and cheaper soon. This is based on personal experience and a bit of sleuthing. As I mentioned - it is a shame you don’t have more medical supervision but that’s the fault of a rigid medical and pharmaceutical fraternity and defintely not something you are crazy for doing.
we all want to feel normal. That’s it- and I personally believe the impact of this condition on our mental health is far more damaging then the treatment in most cases. As long as you are careful and listen to your body I think that’s the main thing. Steriods add a bit of danger- indeed steriods- which are used routinely for other immune disorders both short and long term I would think are more dangerous then jaks- but that’s just my opinion. When you have some time I would definitely be interested in hearing how you managed to get it and how you worked out dose etc. I am overjoyed at your progress! This is why I hang around - I want solutions for everyone- those who can’t afford it, those who are non responders, those who don’t have access to the right information.... I want everyone touched by this condition to at least have the option of successful treatment!
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Amazing cardigan blues!
Have you ever been on xelajanz? I have sent you a friend request for info please.
Thank you.
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I'll respond to everyone tonight, I'll always respond and answer questions I'll just be a bit slower.
I've never been on xeljanz. I've never sought any treatment for AA/AU in all this time until now. I chose baricitinib because it has less side effects and only 2 reported deaths. Cause we have to remember that's what we're dealing with here. I made a tropical treatment at first because I was scared to ingest it without moderation from a doctor. But the tropical treatment was too slow and I had my chemist friend help me out to see if what I ordered was safe. By some miracle, it was. But I don't know if the next batch is going to be.
I'll keep warning anyone who I message not to do what I'm doing because it's plain stupid. But I want hair haha.
Also, I would seriously caution anyone doing these medications with any extreme diets like Paleo/Keto. I hate that it's such an accepted diet recommendation for people like us. And so widespread. I'm plant-based and have seen great improvements in my hair and health since eating more whole-foods and less processed foods. You'll give yourself a heart attack while on something like xeljanz/barcitinib doing keto.
I eat mostly starches and veg daily: potatoes, white rice, pasta, oats, noodles, legumes, lots of spices and herbs, frozen veg, plenty of fruit, probiotics (saurkraut and kambucha) for my gut health, chia seeds, flaxseeds. I'm going to be experimenting with marine phytoplankton soon after NASA endorsed it haha.
Here's a list of supplements I take. This is a temporary to bridge the gap until my diet gives me all my vitamins and minerals: L-lysine, l-glutamate, Salica Complex, vitamin d, chromium picolinate, zinc picolinate, Coenzyme q-10 (can't afford ubiquinol lol), magnesium, and probiotics (can't afford good probiotics and I'm not sure they're any good but they seem to be great for my skin).
I don't take vitamin b-12 because my soy milk is fortified with it or b vitamins in general because my blood work shows I have an abundance. In fact, I'll post my blood work here if anyone wants to see it, I don't have any deficiencies.
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*topical
See guys, this is what happens when you dream of going on tropical adventures but not having hair to truly enjoy the waves due to being too self-conscious to show ya bald head.
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Please message me the information. We might have something in common as I got ahold of baricitnib a year ago. Sounds similar in our stories of what lengths we will go.
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Really great! good luck with Baricitinib. You get it from Europe with Dr. King prescribing? Also Baricitinib comes in 2mg or 4mg, right?
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This is a little over 7 months on xeljanz. I was going AU. My eyebrows and beard were on the way out and I was 100% Bald on the scalp.
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