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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 Shad on
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Hi mastros, glad to see your hair all back! did you see big difference when you changed 10 mg to 20? I changed for 2 weeks then because I cannot afford to buy 2 box for a month I am back to 10 mg and 40 mg prednisone daily. It’s like 6 months and going slow.
Thanks
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10mg did nothing for me. 3 months after being in 10 mg, I went to 15 for 1 month and then to 20mg. Going to 20 was the move that started my body reacting. Before that nothing was happening.
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Permalink Reply by Mashloum on
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Hi every one, as a monthly update for my son progress with 2.5mg since 5th of April 2018, and last week we have increased the dousage to 5mg daily
so far progress is perfect
Frida, please I need your feedback for the lab tests, I have accumulated 4 years results which shows correlation between different test and different period
stil I have concern regarding the parathyroid hormon and TSH
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This is amazing Mashloum! So happy for him! May the success of his hair growth continue
Kind regards.
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Many thanks!
I Hope that all member of the group will have perfect growth and fast recovery
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Whoops sorry wrote my other message before seeing this. I will have a look and do a bit of reading and dig out some of my blood tests to compare. From a quick look I see some familiar issues- low vitamin d and low ferritin - both seem to be consistent with autoimmune issues- anyhow will give a longer a response once I have a better look.
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Many thanks Frida, I feel very happy to share this group our experience as parents since there are many people searching for kids exposure with Xeljanz, taking the risk with such medication alone without having well-experienced physician is by itself a challenge
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I’m so happy to hear you address ferritin. I’ve been tracking mine for years and it’s the biggest contributor to my success I feel. For me being in the 90s is perfect, too high or too low and I lose hair. I was also advised to use a pro and pre biotic daily and that seems to help as well. Last biggest thing was no dairy, at least for me. Good luck
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Kathy, always there is a correlation between ferritin and iron which is -1, if one increased the other one decreased, I asked many physicians in this regard and they could not find a clear answer more than a cyclical exchange between the two tests
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