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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 AlopeciaDestroyedMyLife on
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It looks great Katrina.
The breakouts you are experiencing are more than likely being caused by the biotin you are taking.
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Permalink Reply by Katrina on
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I have taken hair/skin/nails the entire time I've been on xeljanz and have not had any side effects from that combo. I wish you the best of luck with your treatment.
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Hi adml. Can you update us with your status?
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Nice results!!
Congrats, I'm so happy for you!
I just restarted Xeljanz and hope to continue the results. I am not doing cortisone shots as I feel it's not necessary now since I have no patches.
Re: Weight gain. Just out of curiousity are you exercising daily? dieting? I didn't really gain much weight from Xeljanz (maybe 5lbs). However, it was also winter and winter eating, not going out as much. This time around I plan on be very mindful of my food intake (low carb, high protein). I'm also exercising 6x a week.
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Katrina,
Your hair is remarkable. I have been shedding since October about 30-50 hairs a day. I have definitely thinned out but its still not too bad. I wouldn't stress too much about it. I notice more of my hairs come out in the shower and keep coming out, but they all have the bulbs at the end which to me means they weren't effected by an immune response. I think if I was shedding 30-50 hairs a day without growth in October, I would probably be nearly bald today! This goes without saying, it's definitely overall thinned out and not just in spots, especially on the top/crown area, but still is in great shape.
I have spots after lower my dose, which did have broken hairs... and no bulbs were at the end of the hairs.
The shedding you see may be just normal hairloss... I just started taking probiotics (Theralac) and resveratrol. It has only been a few days and I feel SO much better.
Is the shedding you noticing has it been slowing down? I'll run my hands through my hair and pick up like 1-2, a comb 1-2 and then in the shower it is a nightmare its like 10-20 each wash for shampoo and conditioner. It frightens me, but all should be fine.
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Hi Everyone,
I am new to this forum but I have been following the discussions here for about a year. I would like to share with you my experience of using Xeljanz. I am a 35 years old female with 32 years history of AA. I have had AA patches from 3-32 with random periods of full recovery, then 3 years ago it turned into AU. I have tried every possible treatment with temporary or no effect. Even the cortisone injections that were the most successful for years stopped working.
I learned about Xeljanz from this forum. Inspired by fantastic results many people had on Xeljanz, I was eager to try it despite its high price (as where I live now Xeljanz is not covered by insurance, nor there is anything like copay card to use) I had to buy it out of pocket. I took Xeljanz for 9 months starting at 10mg a day and gradually increasing it to 20mg for the last 3 months. I got pretty good eyebrows and eyelashes growing in after 5 months but not scalp hair, not even vellus hair. Regrowing scalp hair was what I was hoping for. Sadly, it didn't work in my case and I decided to quit the Xeljanz. All of this time, along with Xeljanz I've been taking Biotin, Vitamin D, Zinc and Omega 3 supplements, and applying Minoxidil 5% onto scalp. I don't know what else to do... I would appreciate any advice you may give to me on what else to try.
I still have 2 packs of Xeljanz left. I decided to sell them. I bought them from a pharmacy in Turkey (receipt available). If anyone is interested, please drop me an email at ml7184@mail.ru
Wishing everyone to recover from this devastating disease. Let's hope the cure will be developed soon.
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Hello Milana,
I have the same problem and also got the same results from Xeljanz . I was AU for 6 years , now after using Xeljanz, i got back my eyebrows and eyelashes and some part of facial hair .However hair did not grow up on scalp .
Now increased dosage to 25mg/day.
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Permalink Reply by Rascalx2 on
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I have increased hair on beard, sides of head brows and lashes. The hair is pure white almost transparent, for past few months. Anyone have insight if hair turns back to color? I have nothing on top of head, and nowhere else on body..,, seems ridiculous to grow beard to only shave off taking xeljanz. Havinh rough couple days with alopecia, at a point again of asking" how the hell did this happen?" WTF? Its like PTSD every f**kin morning I wake up! Then I cant believe something cant be done.
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Hi Rascalx2, I have full regrowth of head and body hair. Scalp hair came in white and stayed white for the most part. Body hair did turn darker. I am older so it may depend on your age. As it got thicker, the color, although white, was not transparent and looked a lot better. I know it is frustrating, but some people do take longer to get acceptable growth. You are getting some growth which is a good sign. You may need to up the dose.
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