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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 Carole,
i just use a piping rock one (photo attached) and take the 2 per day. I read somewhere that you should take it seperate as it can cause a bit of indigestion in some but I never had that issue with it. I have to reiterate though- I don’t think the Jak inhibitation is strong enough on its own to do much for serious alopecia but alongside other treatments may help a little bit.
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Did any experience an instant shed right when they started Xelijanz?? Only been taking it for 2 days and I'm shedding. I have diffuse alopecia thats been slowly progressing to AU.
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Permalink Reply by Rascalx2 on
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So im thinking to get a shingles vaccination which is recomended beingnon xeljanz, but md said after shot i need to be iff xeljanz for around 2 weeks.. anyone have this experince with time witout xeljanz?
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Hi Katie
Please try to take a deep breath, I can I see how you feel but internalizing this isn’t helping either of you. There are numerous things you can explore. When you say her blood work is normal, what does that mean? What is her ferritin level? That has a very large “ normal” range and it may not be normal for her. I too felt my AA was brought on my stress, a scary surgery followed by seizures and yes, my mom had had AA so it was in my dna. 6 weeks later a small bald spot gradually turned into about 50 percent loss. I struggled for 10+ years and in the last few, by keeping a log of every change, right now my hair is finally manageable. I still have spots, sometimes worse than other but I’m not wearing my topper of late and that feels great. I would suggest being very careful about vaccines and avoid all milk based dairy to start. Research supplements and topical treatments. I had no luck with the scalp injections. And track that ferritin (not just iron). Have faith, this too shall pass. And listen to Frida on this discussion, she’s quite knowledgeable. God bless.
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you can order tofacitinib from bangladesh ..it has almost same effect as xeljenz but will cost only 25 usd or so for one month supply.
also read about autoimmune diet if you havent yet.
i grow my 60-70% hair back by avoiding inflammatory food and oil and by using a probiotic.
fermented food make my condition worse for some reason
i gave that same probiotic to my friend and her hair stop sheding
she dont have alopecia though...just deffuse shedding
many probiotics are bunk also.
but for keeping gut healthy they are very useful
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Can you please let us know which food you avoid? Thanks
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Hello,
i live in America. Is it still possible to order Tofacitinib from Bangladesh? If so do you have a contact or website you can share. Thank you for your input.
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hello patchylachy , i am following this diet since last 6 month
and its easy for me now...although not practical for most.
we humans have evovled eating diet that had omega 3:omega6 ratio of 1:1 ..but today people eat in ratio of 1:7 or more ..this is BIG reason many people today have inflammatory disease..due to diet mainly
i avoid food that have high omega 6 content
These food i avoid like pleague
(1) eggs ( omega 3:omega 6 ratio )= 1:20 !!
i even tried omega 3 rich eggs but paid the price with patches and tears.
(2) red meat ..saturated fat from red meat is highly inflammatory.
(3) milk
(4) curd ( it shud be good but dont know y it give negative effect )
(5) processed oil have High omega 6 , i only use mustered oil which has low saturated fat % and high pufa and mufa %
( omega 3: omega 6 = 4:1 aproxx )
i use extra virgine olive oil too but its costlier
(6) bread
(7) sugar ( i use molasses )
(8)eating out ...they use oils which is not good for me.
(9) any processed food or packed food..no biscuits chips etc
(10 ) wheat flour ( bread is made using this , in my country)
(11) anything that is too spicey which upset stomach.
these food are helpful to me
( 1) oat ( here wheat is not genetically modified )
(2) a natural fiber supplement in morning with probiotic and probiotics everytime i eat..fiber is must in the morning to keep gut healthy.
( 3) soaked overnight soyabean ( not modified in my country , india )
(4) apple cidar vinager first thing in the morning empty stomach , dilluted and with straw , there are caps available too in market but i prefer drinking it , u shud wash your mouth too after drinking it
steamed rice chickpea , soaked almomd , organic fruits , vegetables ,steamed fish and sun dried fish ginger garlic onion are good to me.
chicken is ok to me if not too roasted and it shud always be served with fiber of any type .
the probiotic i take have following ingrediant and very helpful for my gut and growing hair back.there are many brand available online u can choose any
streptococcus faecalis
clostridium butyricum
bacillus mesentericus
lactobacilus sporogenes
fasting will also makes hair grow. i am 100% sure about it.
i forgot to add i take omega 3 fish oil and biotin too
i can feel hair is more silky with fish oil and probiotics.
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Thank you so much!!!!
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Hi Katie,
I went from a full head of hair to AU in 45 days. I went to 2 different dermatologists,the second one gave me kenalog shots every 90 days, which would work but then the new hairs would fall out around day 80. It was a losing battle until I found this site and started researching on my own. My doctors would have never suggested Xeljanz had I not asked for it and it took me a year to finally ask. A year of being bald when I could have been growing hair. I also went to a functional doctor the help me get my bloodwork perfect and a dietician. I stopped eating all Sugar, gluten, dairy, caffeine and alcohol during that year that I was trying to fix myself.I'm probably healthier because of it but it didn't help my hair grow. When I finally started xeljanz, my DR. who specializes in Alopecia was able to get me the first 3 months worth through the Pfizer Co-pay card. I tried 10mg for 5 months with no results and then I asked for a steroid pulse and increasing the xeljanz dose, my hair started growing and 6 months later I had a full head of hair again. You really have to assert yourself with these doctors, I honestly don't think they know. I would not know what I do today if not for this site.Fortunately, my doctor give me script for over seas purchases as I take 20mg a day and could never afford it. Good luck and keep pushing.
( my other dermatologist referred me to her after he couldn't fix me with Kenalog for a year)
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