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 Carlie on
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Talia, that's exciting, I love how there's always something new on here. I looked up Vitamins with DHT blockers, there are quite a few with 4.3 out of 5 ratings. Which are you using and are you on any diets? When I was on the sugar, gluten and dairy free diet, I had some peach fuzz. I slacked during the holidays and now I'm shiny bald. I would go back to the strict diet in conjunction with everything else if I thought it would make a difference but it seems like my hair hits a point where it stops coming in and falls out. It's so frustrating.and disappointing.
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Hi Carlie,
I am interested in knowing more about your diet. You say you had growth when you cut out sugar, gluten, and dairy? After how long?
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I had peach fuzz all over my entire head but it wouldn't stay, it never got very long or turn into terminal hairs. I got frustrated, the diet was really hard. I did it for 1 year, I was also very thin. 5'6" 113lbs. Now I'm back up to about 118. I guess it would help to stick to the diet along with the xeljanz and vitamins.
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Within a couple of months I had belus hairs all over my head. I had a nutritionist who gave me a diet. I was supposed to eat 4 cups of mixed nuts a day, protein and beans 3 times a day, filtered water only at room temperature. no tea, coffee, nothing, only water and 8 glasses a day. Also, no perfumed detergents, deodorant, candes, nothing. No sugar, max 5 grams a day. That means no fruits, no dairy either. Like I said, I did it religiously for a year and expected better results. I was told it would work and to give it time.
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Wow that diet is hard core. 5 grams of sugar is even less then the 20 grams they allow you for keto! I did a really hardcore diet for about 6 months. I was skinny, got skinnier, but when I upped the xeljanz and started the steroids I packed on the weight - partly cause I kind of burned out on my diet and also cause I found the combo of xeljanz and betamethasone made my appetite increase. Weird, I have hashimotos but am hyper so it could be that it's stopped my hyper which was making me so skinny. Either way being fat and bald is kind of worse then thin and bald LOL... I'm still in the healthy weight range but for a gal whose used to being smaller it's kind of weird to be squeezing out of my clothes. One good thing though- I had acne pretty bad at the beginning of xeljanz, in fact it was the most annoying side effect at first, but it's cleared up now, and as long as I clean my face thoroughly every night it stays away.
Im doing the whole 30 at the moment. Paleo is a bit too lax for me (all those faux chocolate desserts just make me go a bit cray cray) and keto, with the dairy, was a bit icky, I felt like my gall bladder and pancreas were aching from all the work I was making them do (And keto is no fun without dairy). To be honest the diet I was on ( similar to yours- clean protien, nuts, coconut oil, no sugar, dairy, soy, night shades, sweetners, legumes, fun) didn't seem to impact on my recovery, in fact when I went off it was when the hair started to come in but that coincides with me starting my steriod pulsing, starting LND and having been 3 months into my higher dose of xeljanz so not really a good barometer of what actually worked.
it will be interesting to see how you respond to xeljanz. The fact you got some regrowth from going on that strict diet, I think, bodes well for you. Your body seems to want the hair to come back, just needs some help. I really hope you get good results at 10 mgs.
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I'm praying I can get my the UCSF Dr. I'm seeing in Feb. to prescribe Xeljanz and they can make a case for my insurance to cover it. Does your insurance cover it or do you also have RA?
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I've been on xeljanz for 2 weeks and have white hair coming in and hair follicles starting to surface.
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Awww, that's really good news, are you taking 2 pills, cause my dr said start with 1 pill for a month then go for 2 . Now I'm in 1 pill started 2 weeks.
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Shad,
I am on 11mg XR 1 pill. However my hair follicle were somewhat on the way in before xeljanz but I'd say 5% of my head had any indication of hair or any stubble.
Now I'd say I have about 60% mostly on the top of my head and the sides are still very sparse.
I'm confident that in a month or 2 my head will be covered with hair follicle, maybe not long thick hair but maybe my head will look like a five o clock shadow.
It's also extremely slow to grow. I haven't shaved my head since Christmas. Now I just buzz the patches that come in randomly. Previously I had to buzz only 2 patches. Now I have to buzz about 10-15 spots of patches /sprouts of long hair. In the matter of 16 days of being on xeljanz.
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Awesome! That's quick! Looks like you are a fast responder!
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No I'm from Australia so unless you have RA (which I don't) then one payer system here won't subside and insurance won't cover:(. I have friends overseas though who have helped me (quite legally- I did all the research on importing pharmaceuticals) to get for a much lower (still pricey but not as expensive) cost.
its a tough road trying to get it. I am hopeful that once the patent expires the price will become more affordable for everyone. I get so cross when I read about people not being able to access the medication- despite years of research about how this has massive psychological and social quality of life impacts still it's not considered a serious enough condition to be treated accordingly.
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