Alopecia World
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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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Yes I understand Newjack- we all have ptsd from this which makes it difficult to overcome our fear of this happening again, or the treatment not working, or a shortage of medicine, or this happening to our loved ones. It’s totally understandable that you are frightened- many of us, when the hair started to fall were told it wasn’t happening (it’s in your mind), or you’ll only get one patch, or it’ll regrow in 3 months.... then we ended up losing it all and being told that there was no effective treatment.... so even when we recover we still have this inability to trust medical judgement or the opinion of well meaning loved ones... I see a psychologist to try and manage these thoughts myself so there is no judgement. As an outsider your hair looks amazing - but I also understand the fear.
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Thanks Frida, I should probably do the same and see someone in my area. If anyone knows of anyone in NYC please let me know.
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- Hi Frida. Very well put. I think I probably should have found someone to talk to over the years. This site and posts like yours are a big help / support
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Hello I hope everyone is doing well! Recently I came across an article that weed ( cannabis) can help us in alopecia. i am still carrying out my research but would appreciate everyone's opinion here. Yes its safe to say now that i am a res ponder and have had amazing results with predisone and tofacinix. however i am not sure which meds are working on me but my scalp is full of hair about 1 inch and my beard is growing and my eye lashes are back guys!! hope you all have an amazing holiday ahead.
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I don’t use the stuff just cause it isn’t really my thing but I have read it is a potent anti inflammatory so that could be why. They are using cannabis oil now for many forms of arthritis and other inflammatory disease with success. I think if you haven’t tried it and want to if you can use it orally - as an oil as any smoking probably isn’t good for lungs. If you smoke it recreationally then it would be interesting to hear of your experience. I think there are many anti inflammatory substances that can be helpful but for severe alopecia they are more of a cotherapy as opposed to a singular use. Sufferers of severe alopecia need the strength and specific Jak targeting to allow the hair to grow, so antinflammatories will help in a small way but can’t do the full job on their own. I think this is why people who promote clean diets for hair growth are misleading- it may reduce inflammation enough to see fuzz but it can’t push you into cosmetically significant regrowth.
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Dj88- how are you? I’ve been wondering of your progress and health? Hope things are growing well and you are doing ok!
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Permalink Reply by Fingers_Crossed on
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Has anyone used low level light therapy like those laser caps- cappilus, I-restore, theradome along with Tofa to help thicken their hair?
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For those that have been on Xeljanz for awhile, did they ever notice just generic shedding of hair and then it goes back to normal? I swear I think I am going through some sort of shedding on the side of my head and over the summer it started thinning out and also growing in at the same time.
I dropped to 10 mg November 2018 and I had to go back up to 20mg Feb 2019, and ever since then I I haven't been in full remission I have had a spot pop up here or there, 95% of my spots grew in.
Just noticed another spot that isn't completely bare it just looks like the hair stopped growing and I swear I am going through some thinning on the side of my head. I can see my scalp pretty easily.
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Does anyone have crazy cystic acne while on Xeljanz? Mine has gotten so bad. My doctor says this only happens to 1% .. lucky me. Meanwhile after 2 months it still hasn't stopped my shedding :(
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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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