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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 Carlie on
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I'm on my 4th month of xeljanz. I saw my regular dermatologist and asked for the betamethasone and was told I needed to talk to my specialist about it and because I am on xeljanz, he wouldn't give me my quarterly shot of kenalog. I have an appointment to see my specialist on 7/18, this coming week, but meanwhile most of my fuzz seems to have gone away. My lashes and brows are still here but I am using Lumigan, which I think is really helping. Clearly the steroids are necessary for the scalp regrowth, so hopefully, I can convince my specialist to prescribe them for pulsing. This is so frustrating, this disease is wearing me out. I hate being dependent on these drugs but I hate being bald, more. I must admit that my diet is healthier than ever before and all the supplements must be a huge plus because my blood work is better than ever, including cholesterol. I don't think the average doctor realizes how devastating this is. I hate to compare it to cancer, but a friend of mine who had cancer lost all of her hair and she said to me, "at least I knew my hair would grow back" and 6 months later her hair was shoulder length and thicker than ever. Her prognosis was good, although the treatment was hell but it wasn't forever like this feels. I'm just feeling a little sorry for myself today and needed to vent.
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I totally understand! My husband comments that for me, with my phobia of hairloss before this whole thing struck, due to a childhood friend who lost all her hair (AU) this was worse for me then a cancer diagnosis- because of how I manage stress- I tend to just look forward - with cancer I’d either recover or I’d die- I wouldn’t have to cope with the “forever” aspect of this condition. I hate saying that I’d prefer cancer and am not taking away from the trauma of that experience- just that for my unique psychological make up- I have faced death before - and it scared me less.
I’m frustrated for you Carlie. It really annoys me when doctors don’t listen to what the patient wants when the patient often knows more about the condition and treatment then the doctor... and we are the ones that have to live with the condition. I think you’d only need 3 months on them to get it filled in and then you could be off them. I hope that the specialist listens to you and either gives you a script or offers an alternative....
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Hi Okan, don’t know the numbers but I do monthly and bi monthly when steriod pulsing. Only ever had one bad number (liver related) as the docs always just say all good or no good and I really only look at thyroid number due to hashis. I am actually kindof surprised my bloods have been fine because I damaged my kidneys due to eclampsia after my sons birth. They got the function back - had dropped to 50% but then came back up to 90% which is Normal for my age and no pro s on my meds - even during pulsing.
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Hi frida,My cortisol level has dropped 11 times since I started.Cortisol level fell from 11 micrograms to 1 microgram in morning.They suspect the pituitary glands and they will test next week.
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Yes - cortisol can be problematic wirh steriods. Have you started pulsing yet? That’s the biggest risk with steriod use is that it can screw up your pituitary gland, but I would be surprised if xeljanz alone would do that. I really hope everything is ok- if you need you could always take a break from everything and then restart after everything normalises - some people seem to get better results by stopping and restarting.... let us know how you go.
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My doctor did not let me use steroid together with xeljanz.So I could not start using steroid yet.I use ldn with Xeljanz.They will start testing on Monday with Synachten 0.25 mg
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Hello Okan, my Functional Dr. who believes in the homeopathic route had me taking cortisol. I think my levels were low before I started xeljanz. When I first saw her she ran a bunch of blood work, everything, and mine was low. I will check it and let you know what it was, what I took and where it is today.
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Thanks charlie.I hope it's a side effect of xeljanz.My cortisol level is very low but also ACTH level is low.ACTH approximately 10.73 pg/ml.In any case,it seems as if I need to get to steroid treatment.
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I just checked, my level dropped from 21.6 in 2016 to 13.8 in 2017 before I started Xeljanz. That's probably why I was told to start taking cortisol supplements. I don't know what it is today.
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I did some research,cortisol level can be decrease in weak immune system.I think that's our problem.I don't think it's a problem with my pituitary glands or adrenal glands.
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