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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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Hi Mashloum. Looking at his blood results it appears your son numbers seems to have improved over the last year or so. His vitamin d and ferritin are low- this is consistent with auto immune issues generally (mine are the same). The thing that kindof jumps out at me in his results are his low testosterone and high TPO readings. Do a bit of reading i found that there seems to be a correlation relationship with hypogonadism(issues with the pituitary gland) and autoimmune issues like Lupus, Alopecia, rheumatoid arthritis. Because he has yet to hit puberty I don’t know if the testosterone numbers are just low because of his age, or if this is an issue. His thyroid hormones look reasonably good - low Tsh, from what I’ve read, is better then high tsh. I think going in to puberty you will want to keep an eye on his testosterone - it maybe be fine but supplementation treatments seem to be very successful and some of what I’ve read indicates treating the hormone issue can stabilise other autoimmune issues as well. In children hypogonadism is usually something they are born with and often is missed until they hit their teens when they don’t mature in the same way others do, with adults it’s usually a result of trauma to the pituatory gland. The fact that you as parents are so aware of his blood results is actually really good- as you will be able to catch these things early. That said I am basing this on reading some studies and, not being a doctor, I can’t say if there is something else that might be causing the blood results. I would encourage having a talk to your doctor and ask him to research up if the testosterone levels could be due to hypogonadism and what treatments could be looked at for him going into puberty. I would say at this point they will probably just want to monitor it until he hits his teens and then focus on how he feels, his results etc. xeljanz might help a bit as hypogonadism, while inherited, does seem to have an autoimmune aspect to it as well. Other then that his blood results seem to be better at his latest tests then they have been during the last three years (he had a period of similar stability in 2016).
I think his response to xeljanz - both in terms of hair growth and better blood results is super encouraging! And with parents that are focussed on his health and finding answers I think he’s going to grow up healthy, happy and loved! And for children - feeling loved and knowing his parents are monitoring his health ( so he doesn’t have to worry about it himself) is going to be such a help to him as he grows!
So many children have challenges - as parents we have to do the best to minimise the impact these have on their childhood experience. I think you’re doing a great job in this respect!
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Permalink Reply by Mashloum on
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Thank you for your kind response, the ttyeroid hormone it was discussed with many doctors here and their reply was do not concern if calcium is fine!
while the testosterone matter, all of them emphasize that this not a concern since still he is not adult and after that stage be come mature, then it could be assessed
as I told you before the physicians in this region focusing only on their speciality with limitations, and I could not find a good name for someone can go extra mile and search the case well
but I am so happy for what has been achieved so far, with hope that we can find someone take these results for a practical comprehensive treatment
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Yes I thought that might be the case with testosterone as he is still so young. I do think his numbers look better in the last few blood tests then prior which is great news. His body seems to be coping with the medication quite well. Doing regular blood teats for the xeljanz will be so informative for you guys as parents and will help keep on top of any issues in other areas as well. It’s just so great to see this working in a child! I’m looking forward to the photos of full regrowth in your son!
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Hi just wanted to share a few photos for anyone who’s following my regrowth.
I shaved my head 2 years ago this week due to rapidly progressing AU.
that was also the week I started Xeljanz.
i started seeing growth 3-4 months later, and this is me today. I have 100% regrowth on scalp, eyebrows, eyelashes, and body.
i also got some blood work results back yesterday, and all is within normal limits.
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Wow you look great! What mg of the drug have you had to use to maintain growth? I haven’t followed your progress so I’m sorry if you’ve noted this already. Thank you.
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How wonderful it must feel when you look in the mirror and see all that hair! You look amazing. Did you ever use minoxidil? I hate to start using it and I've been on 20mg for about 6 weeks and I'm beginning to see some progress. Thank you for sharing!
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I used minoxidil in the beginning- while my hair was still falling out. I don’t think it made any difference good or bad, and it was expensive
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I love it! The hair is so thick and you look amazing lady!
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