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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 mastros on
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Some of them without injections, some of them with. Some are still pending. I don't have a definitive answer :-) Keep in mind we are not doing science on our selves, so not proper experiments on what made it close. If a combo of things (medication + injections for instance) works, then the end result is what matters :-)
Going up to your dose that worked will make you feel safer too. It sounds like a good choice.
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Hi All,
I'm back to report on my 19 year old son's progress in weaning off Xeljanz, 5mg., twice a day. He was supposed to be weaned down to one 5 mg tablet every other day by now but was afraid of losing his hair again and didn't follow through with that schedule. His Dr then prescribed a regimen where he takes two 5mg pills every other day and one 5mg pill the other days for a total of 11 pills/week rather than the 14/week he used to take.
(Given he's 19 years old, that is probably the amount he was taking already.) His hair looks great.
Good luck everybody. This is a challenging disease you are facing. There is so much research out there right now I'm convinced they'll break the code and craft a treatment that works for everyone.
Have a good New Year and thank you for sharing your progress. You're all in my thoughts and heart.
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It's wonderful to see everyone doing so well! I am terrified to lower my dose. I am on 20mg a day and doing so far so good. I've been taking the generic brand now for several months so the cost is not so much and it's easy to continue on the higher dose. Christoper;s mom, was your son Au or At?
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Hi Carlie,
In about August of 2016, my son, then aged 17, went AU in a matter of 4-5 months.
By February of 2017 he began treatment with Xeljanz 5 mg., twice a day.
He responded very well from the get-go, possibly because he began treatment relatively quickly and though tall, is rather thin so maybe he doesn't need as high a dose as other people.
I don't blame you for being afraid to lower your dose. I'm glad my son's doctor respected that and is drawing down very slowly.
How do you get generic?
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I have 2 sources and order from both even though one is a little more expensive. Tofinib is the one I got from my first source and it works for me, it's about 650 for 6 bottles of 60 with 60 tablets. The Beacon source that everyone is talking about is very cheap, $15.00 for 30 tablets and I bought 20 boxes, I'm mixing the 2 until I feel that the cheaper one can take over. I feel good on 20 mg a day and plan on remaining on this amount as long as my bloodwork is good.I am careful with my diet, gluten and dairy free. little sugar, alcohol occasionally and lots of supplements. Someone had the Beacon brand tested and it was 4.2 mg of tofacitinib. But who knows if the Xeljanz is really 5. You will need a prescription and passport for the order to get through customs.
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Playing on the safe side on the medication is the best you can do. I am also super reluctant to lower my dose.
As for the diet, before I started medication I tried to fight my alopecia with taking care of it and using supplements. My alopecia started getting better. Though, over time I restricted my diet even more and in parallel my alopecia got full fledge and led my on my route towards losing all my hair.
That was the turning point on me, I researched about JAK inhibitors, found the forum, bought Xeljanz on my own, found some doctors and freed up my diet fully to eat whatever I want and actually listening to my body for signs if some food was not really the best fit for me (e.g caused me bloating).
The relief of eating whatever I want has been amazing for me. All the tests I was doing to figure out what to eat or not are not science, they are scammish :-(As for the supplements, the market is so unregulated, nobody guarantees neither the actual mg of the substance in each bottle nor the fact that the substance in the label is the only one inside.
My two cents, be careful.
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I agree, I was on a hair supplement I purchased at Whole Foods and found out it was affecting my liver function purely by accident when I doctor was testing for another reason. Scary.
But tracking my Ferritin twice a year and adjusting my iron supplement accordingly has really helped my hair loss stay more stable.
And pro and pre biotics as well.
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Too many people take advice on Internet forums and start popping vitamins and supplements thinking hey it's all natural and safer than medication so why not...
Recently there was a story about a guy who was otherwise healthy, and just started taking green tea supplements for about 3 months because of what he read on the internet. He ended up damaging his liver so badly in 3 months that he needed a liver transplant.
'The food supplement that ruined my liver'
It's scary how much damage all these so called "natural" supplements can do. So before you get all excited about what you read on these forums and start popping DHA, Green tea, magical diets, etc think twice and be CAREFUL.
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I agree totally, I went to a nutritionist and for the first year I had AU, I ate only meat, beans and vegetables, water at room temperature only, no dairy, gluten or sugar of any kind. I got used to it but I missed out on a lot of fun and I think it made some of my friends uncomfortable, having to adjust a menu for me. It didn't help, not one new hair. Now I go to a functional doctor who checks my labs every 4 months. She is amazing and gives me ideas about what to order on Amazon. She also prescribes my LDN when no one else would. I take bio identical hormone supplements that are actually less expensive than the prempro I was taking. If my labs show I'm on the low or high side somewhere, she tries to help me balance it. She also, said I needed t3 for my thyroid and all I've ever been treated for is my low t4. It really depends on who you see and trust. She's also an athlete, like myself, so keeping my bones healthy and strong is a high importance. I'm 67 and ride competitively in show jumpers, falling happens. I learned that as we get older you need to take vitamin K with calcium in order for it to work. She suggested colloidal silver whenever I feel like I'm coming down with something, but like everything else it should only be taken as prescribed. The biggest problem is some people think more is better and that's why they have problems. I believe in the Wellness Formula, great stuff for knocking out a cold but I am guilty of taking too much and poisoning myself, luckily I didn't do any permanent damage! My cholesterol was high but Cholestoff has brought it down and I do not need to take the medication. I, also take 5000 mg of vitamin d every day. Even though I practically live outdoors in California, it was low.
I wish I knew these things 30 years ago.
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I have been to,d a functional Dr is a good thing to do but I don’t have a clue how to find a good one. Any suggestions? I’m in the Chicago area.
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It was 2012 and I just can't remember anymore. I wrote to Whole Foods and told them what had happened as a result of this supplement (my dr documented through research when my AST shot up) but I remember seeing it on the shelf a year later. You really do have to be careful! Sorry I can't remember the name.
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