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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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Replies to This Discussion
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Permalink Reply by Starshine on
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I started AA, but turned AU. Had no scalp hair or body hair when I started Xeljanz two years ago.
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Permalink Reply by sadele on
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Starshine, I am So So happy for you! Wow! I was almost there but had to stop the medication... starting back next week. Did your lashes and brows grow back? Oh how I miss mine... I appreciate you for sharing a picture, I really believe it encourages a lot of people on here when we can actually SEE progress. Thank you!
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wow! very nice regrowth.
stupid question but am still gonna ask. if your hair was dark and now blond, what stops you to dye them brown? u afraid that it will shock them and make them fall? are they thick enough?
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The color looks great on you! Weren't you on 3 pills a day? You were successful cutting it back.I was able to get xeljanz approved for this year so back on it.I still have most of my eyebrows and lashes and do not want to lose them.I hope baricitinib will not be as expensive as xeljanz would love to try it when it gets approved.
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Permalink Reply by Suzie on
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Starshine your hair looks amazing! We are all so happy for you. Thanks for sharing your update cause it really does give us so much hope! I am on 2 pills a day for about 4 months. I wasn't AU, just AA but with a lot of thinning. I was able to get hair extensions to help with the thinning. My patches are almost all filled in and I know it's going to be a long time before I notice it getting thicker. Patience is the key!
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Awesome, result!!!
You look fabulous!
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You are beautiful! You fit your moniker.
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Thanks everyone. Yes, my lashes and brows did grow back, although my brows are not as filled in as I would like. The lashes, however, are even thicker than they were. The new hair is definitely thick enough and I could dye my hair to its original color, but my dermatologist suggested that I don't. Even though it has been established that hair color does not effect this disease, he is afraid to cause any type of inflammation and hair color does absorb through the hair follicle. I can live with the white blonde, it sure beats no hair at all. I am older and that could be why the pigment did not return as well as others. I was on two pills a day when I started as I was a slow responder initially. When I upped the dose to three, my growth took off. I also take Plaquenil every other day. Alternating now between 2 and 3 pills a day does not seem to have had any adverse affect. I hope this has given hope to those who are starting out. Have patience. You may have to increase the dose, but don't give up.
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How long were you AU before beginning Xeljanz?
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I had AA for 3 years, not the patches, but severe thinning which progressed to AU. I was AU for about 8 months when I started Xeljanz.
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You look amazing star sunshine!! Didn't you go on Ruxolitinib because you never responded to xeljanz ? and at what did you up your dose to 3 pills a day and what month did you see success?
Thank you
Kind regards
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