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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 Meedo on
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Dnp224 I have had crazy acne starting two weeks into xelijanz and I started using duac gel twice a day , I’m three months now , my acne has settled down a lot and also I’m still shedding and not much growth at all, hang in there .
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Hi dnp, I always had super clear skin and I do get more spots than I used too but it has settled a lot from those first 6 months- they were the worse- I use an over the counter acne wash and an acne cream and that helps a lot. Still a tad more than before but very manageable. The worse place I get the zits- my scalp!?! How weird hey? I figure that’s cause I can’t use the acne wash and cream on my scalp. Give it some time to settle - I personally think all the side effects are worse in those first 6 months - weight gain and acne- after that it slowly settles for most - I was reading somewhere that some blood results go a bit haywire at the start too but then the body adjusts and the blood results normalise.
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Anyone recommend oral rogaine?? 3 months and don’t have any results; shedding until completely bald still ongoing.
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Hi Joja - from what I can gather some of the specialists - ie Dr king etc are suggesting oral rogaine over steriods as the side effects tend to be more manageable and reversible. That said I think some people struggle with oral rogaine more then others and I do feel some do better going on a short steriod pulse. The key to doing a steriod pulse is to try and do it for the shortest period possible - so as soon as you get that growth try to wean down. I was on 3 months then weaned off and I coped well - but it is a very individual thing.
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Merry Christmas to you Ricky and congratulations for your great progress. May 2020 bring you and your family happiness and fulfilment !
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Merry Xmas Ricky and all on this site! For those who have had success - wonderful - funnily enough - I think once you go from AU to recovery Xmas becomes a bit surreal - all that you want is your hair back and so all those Xmas wishes or New Years resolutions become meaningless- your hair is back- what better gift could you imagine?!? For those who don’t have success this xmas and New Years my wish would be that you find a path to recovery and my new year resolution is that I’ll keep searching for that solution for you guys! I hope 2020 is the year that recovery happens for all and that by next Christmas you will enough regrowth to enjoy the holiday more!
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Yeah, it certainly makes more sense to vape CBD at certain medical conditions. That's the number one tip for getting rid of the pain. Gummies is a great alternative too: https://vapingdaily.com/
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My spot that I've been very worried about seems to be filling in. I've been using clobetsol for 2 weeks and it really helped with the progress. But what I can't shake is shedding and thinning. It is probably in my head. It's with flash
Today
Dec 18 with flash
I'm probably freaking out and my hair just got longer.
I think my anxiety is kicking in and wondering if xeljanz stopped working.
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Hi NewJack,
You're not imagining things and you're not being paranoid. There's some very slight thinning on the side, and around the neckline, I really don't think it's your AU.
Your scalp is somewhat pinkish/red. Do you feel a slight itch, burning, or irritation sometimes?
If it's what I think it may be, and it's pretty common after being on Xeljanz for a while, it's harmless and very simple to treat.
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No burning or itching. The hair behind my ears are actually filling behind my ear..
The first picture was from today and the second picture is from Dec 18th(2 weeks ago)..
What do you think it is if it's not my AU? What's needed to treat it, I've been putting clobetsol on my spot and it's filling in. I'm thinking about shaving it down and putting it all over my scalp for a few weeks.
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