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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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I agree. I have hashimotos as well so it makes sense if they are both th1. Also there seem to be studies which suggest that American gingseng, querctin ect seem to help in AA. I think Patchesforlife linked a study about American gingseng which was very interesting.
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Hello frida two months to 10 mg what do you think of my progress compared to yours and others? am I in good progress
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It was much better then mine at 2 months! I had zip. You have some dark hairs there too so very encouraging. I would stick at 10 til three months and see if it thickens up then maybe consider slowly upping the dose to 15 then holding for a month, then upmto 20mgs. The fact you are seeing hair at all at three months is very encouraging! Faster then me I must say.
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Hi Frida, I'm having trouble finding the Gingeng study, do you remember how long ago Patchesforlife linked it? Kathy
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Thanks Newjack! So grateful for xeljanz and the people on this forum!
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curious, did you ever eliminate dairy and gluten? I've been much improved (though not cured) since I stopped those and added vitamins my doc in Wilmette,IL
recommended.
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Hi kathy can you please list the vitamins ur doctor recommended?
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Nordic Naturals Ultimate Omega 2X-two per day (only this brand from them or Amazon for purity)
Vitamin D 1000mg per day
Claritin 12 hour non drowsy- morning & nightSlo fe iron every other week checking to be sure it stays in the 80-90 range
Men's Rogaine & Betamethasone morning & night
My Pharmacist also suggested daily pro & pre bionics-(Florajen & FOS powder)
But I think more than anything TOTALLY eliminating dairy (casein...all the types)was most effective.
And she said if you feel a cold coming on cached cooked mushrooms and take Elderberry. All about keeping the immune system stable.
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Hi Kathy,
Did you get explanation from doctor why do you need to take Claritin?
Thanks!
JG
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Hi Kathy, is this one for me? I always feel a bit like that person on the street- someone talks to you and you look behind you to see if there's someone else as your unsure they are wanting to talk to you. Lol being the chatterbox I am I'll go ahead and respond anyway.
i did stop dairy, wheat, soy and everything delicious or a long time. I'm not sure if it helped. I still stay away from gluten, mainly for my hashimotos but I do have small amount of dairy and incidental soy (it's in everything!!!!) so I'm not gonna eat a huge piece of tofu but I eat stuff that contains soy in small amounts. I found it difficult to restrict too much as my kids are very fussy eaters and a lot of the things they do eat are things I was trying to eliminate. I'm thinking of eliminating milk again to see if it helps with the pimples etc but I like milk in my morning coffee so I am resistant.
i take vitamin d, biotin, vitamin e supplements and am off and on with quercin and curcumin. I should take iron as I am deficient but it gives me a belly ache so I'm kindof being slack about that. I take Allegra too. To be honest I think the supplements only help a very little. I think the xeljanz and pulsing steriods (which I've weaned off now) are what really got my hair back. I'm just hoping the supplements keep it growing thicker and faster!
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Well I didn't mean to send to you, Patchylatchy asked and I guess I screwed up my response! But I'm still glad to hear what you've tried. And I forgot to mention my iron supplement of every other week as my Ferritin count is a big for me. I'll give this a try again and see if I can respond correctly! I was looking for the study you referenced on American ginseng, I couldn't track it down. Thanks
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