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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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Replies to This Discussion
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Permalink Reply by Frida Rupert on
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I agree Rascal2. Many on here have tried diets and religiously followed them for years with no progress. Being healthy in your food choices and knowing what you body runs well on is important but unless your body was going to go into remission anyway I don’t know if diet would impact much on AT or AU. Perhaps for TE it would. Autoimmune disease iexists in every culture around the world - many of which have vastly different diets. If diet has that much impact so does the air we breath but unfortunately none of us can stop breathing (unless we die) so it’s about managing to be as healthy as you can while utilising the amazing scientific knowledge that we have developed as humans.
Eating healthy, staying positive and exercising moderately is helpful but for extreme cases of alopecia I don’t know if it would be enough to bring back hair. Having said that maintaining your health on xeljanz is important so do what makes your body feel stronger.
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Hey all,
It's been about 2.5 months in my increased dose .I have about I would say 6-8 spots and general thinning.
For those that haven't followed me I had full regrowth in about 6-8 months on 16mg and lowered my dose to 10 mg. I was on the lowered dose for 3 months before switching. During that time period I had spots and shedding.
I switched to 20mg mg January 17th and one spot is about 60% filled in, the other about 50% and 3 are just starting to grow. The rest are pretty bare .
I'm still quite nervous that this won't work as good as the first time around. I basically found a new spot last night but it must of been there for a bit because it already has a little bit of regrowth.
I basically have come to terms that it this will work, just because this time it is AA it doesn't mean it will work faster, it will most likely take the same amount of time it took me to go from AU to 100%..
I am going to start using minoxidil on my soots, I just don't like how it makes my hair feel... I'll post some pictures later on during the day .
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Behind my head, when I posted in deceDeceit was the size of a dime grew quite large and started regrowing in the last 2-4 weeks.
side of my head I had 3 spots that all grew and kind of merged. I posted a picture of them back in January .it's actually bigger, wraps around the ear, but this portion is growing in. Behind the ear is more bare .
Just found this yesterday, I remember in January I felt see tingling in this spot and noticed thinning and broken hairs. Was hoping I caught it with xeljanz soon enough .
It looks like it already started regrowing I think.
I have about 2 or 3 other spots that are really small... But this is my progress from January 17th to today increasing to 20 mg . I am a bit sad it's not quicker or at least better results. I feel like it's not coming in as fast like when I first started .
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Anyone else use Tosacinix that made from Bangladish and get a good results!?
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yes there are some on here that have used it on this forum, most with good results or results comparable with xeljanz. It’s been tested by a forum member at 4.2 mgs vs 5 mgs in the Pfizer brand but still very cost effective. Read back through the forum and you’ll find examples of success (search the site for “beacon” and “tofacinix” for quicker navigation).
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Hi NewJack, I’m sorry you are going through all this stress. One thing I always think when I look at your photos is how amazingly thick your hair is, however given your experience with AU, I know spots are super scared regardless of the coverage I’m pthwr spots. Try to get some peace of mind that the regrowth has started so soon you will back to full coverage. You’re doing good!
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My hair is still very thick (not as thick as it was when I was at a full 8 months of 16 mg) but I will take it being AU.
I am happy to see that my spots are filling in and my shedding has gone down a little bit and hopefully by the summer I'll be back to where I was as far as thickness.... Regardless my hair is a little less like a brillo pad and I can style it a little bit easier LOL..
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Permalink Reply by Sad_Rapunzel on
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Please tell when did you start notice regrowth?
How many months on this pills it took to see visible hair growth?
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Hi SR, it varies vastly on the individual. Some get good results in 4/6 weeks, others around 3 months, some take up to 6 months +. Dosing and cotherapies are sometimes helpful to getting the regrowth happening and then can be weaned down or off. Many need 15 to 20 mgs for good results. Have you found any patches yet or is it still diffuse? Also- are you noticing considerable shedding or is it in line with normal hair fall. Xeljanz will only really work if it is autoimmune alopecia so may not be helpful for TE or nutrition related hair loss. I looked back at your photos, and one thing that I used when I was losing hair before it got to AU was tinted dry shampoo. If your scalp doesn’t react to it, it is a very good way of thickening up the hair you have until you can regrow. I got away with no wig or hat coverage until I had about 30% left and then I needed a wig and/or hats...
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I was on 10mg for 3 months and then increased it to 15 mg .I had 100% of my hair at full thickness in about 7-8 months .
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Permalink Reply by Beth on
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@fridarupert. Thank you for being so positive and helping answer mine and everyone else’s questions. It’s been a while since I’ve been on here but here are some recent pictures. Today was the first time I wore no hair or hat out. Thank you for being you !!
Beth
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You look amazing Beth! I bet it feels so good to be out in the air feeling that breeze on your head. I’d forgotten how good it felt when I was in wigs and hats and then those first few months -it was lovely:). Always overjoyed to see another person recovered from this condition!
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