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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
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you are gonna catch up with me in no time at all! Very encouraging to see your response! I'll hit up my doc when I get my steriod jabs for the betamethasone cream- thanks for the tip!
very blury pictures cant see shit
Selfies of my head are hard to take. I'm usually rushing as I'm about to hop in the shower (that's when I take my wig off for the day) and my kids don't give me much time to muck around trying to get clear shots- clearly my photography skills could do with some improvement. There are 3 patches at the front. The rest is covered with brown, light brown and blonde hair around an inch to an inch and a half long, it's a bit like a brindle coat on a dog. It's fully covered apart from the front which has 3 thumb print sized spots with only very short white hairs. They are slowly diminishing but definitely gonna need some steriod shots to encourage them and maybe cream too...
i am so happy for u
Thanks Patches,
hows your journey going? I know it's early days for you so don't stress if there is no growth yet. Have you got LDN yet? I reckon that is helping mine a bit.
Frida, what does pulsing mean? Not using every day? Kathy
Yeah-when you take oral steroids daily your adrenals can get screwed up as well as a bunch of other problems. Pulsing reduces this by giving you a massive dose only two days a week if your doing oral steriods or monthly if you are doing intravenous steriod. By pulsing you get many of the benefits of using steroids while by passing some of the nasty aspects of steriod use as your body still maintains normal adrenal function on the other days. I read a study on xeljanz where they used intravenous steroids and that helped get hair growth started etc. intravenous was too difficult to arrange for me so I am doing oral Micro pulses. I wrote a long post about it over a month ago with references to steriod pulsing and alopecia so if search on "steriod pulsing" and my handle you can have a read. I found it quite interesting, even the results without xeljanz were reasonably good. Again it's important to be monitored by a doctor while doing this...
oh, ok. I have always used topical. Never had any dermatologist suggest anything oral.
I’ve only been on for 2 1/2 months so too soon to tell. Obviously it’s only about growing not preventing but my friend who suffered will female pattern baldness all in the front after a year has had great results. Her hair was always fine and wispy as well as sparse and now she has a thick head of hair. So it def worked for her. But expensive
Just updating
I had massive irritation on my beard today and clumps fell out. Not having the success that I'm having on my head that I am with my beard. I'm assuming Alopecia Areta is active still very much in my beard. Everyday I wake up with new hair on my head. But my beard is quite the opposite. It feels like it's on fire and I have needles everywhere. Last week it was actually winding down. Yesterday and today it's been probably at it's worse. Hopefully xeljanz just nips this in the ass all together soon.
Can anyone update me on when they saw beard growth? And what dosage they had? I see my doctor next week I'll ask what else can we do for the beard since we're attacking the scalp at many different angles.
That prickling feeling sucks. I suspect your beard is at a different stage then your scalp- ie maybe the hair follicles are pushing out dead hairs to make room for new hairs? If your scalp is responding so well I think it just needs time to sort the beard out. From your photos you have quite a full beard- is it coming out in patches or just general shed. If in patches I'm pretty sure you could use betamethasone cream like you using for your head... if generalised perhaps more difficult but maybe a shot in the bum of some steriods might work to stop so you can consolidate the lose.
It's patches really but I have a lot of patches. That's the biggest one under my chin then k have about 3 more that's covered by hair because my beard is pretty massive.
It's not really noticable when you see me straight on. It just looks less thick/full but still normal. I notice it because I'm used to my beard being perfect and built by the Greek gods them selves :)
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