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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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So encouraging. The hair is so dark too which is showing it's not just baby fluff either. A few more weeks and th spots will fill in I reckon!
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Saw my doctor today she said my blood work is even better now before I started Xeljanz.
She mentioned I should bump it to 15 till my hair comes in and then go back down to 11mg. She said since I'm having such good success at 11mg she sees no issues upping it and dropping back down to speed up the process.
Anyone see a problem with this?
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Hi guys - I think this week is the week I can say I have 100% of my hair back. It's taken awhile- I started late August 2017, the real results kicked in after a dose increase and most of my scalp growth has been since January 2018. It feels great to have it back but, as you guys will understand, the fear and anxiety that comes with alopecia lingers on. I hope that with time that fades a bit too. This site and the people on it have been such a support for me during this rather scarey journey and I hope, in some small way, sharing my experience may make it easier for people who are at the beginning of the xeljanz journey.
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Permalink Reply by Toxicmosquitoaf on
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Your hair are in Gods hands, just trust the process. Anxiety will go away.
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Frida!!!!! This pic is AMAZING!!!!!! Truly blows me away! So so happy for you, particularly as you have been such a huge support for me on this forum.
I started on 15 mgs this morning (after 8 weeks at 10). I worry it is not enough of an increase. I have not seen a single hair yet.
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Thanks Anna! I am gonna pm you with my timeframe details etc ect- it's hard at the beginning- I was like 90% at the beginning that I wasn't a responder- patience and experimentation is key with this medication. Hold on to the fact that I didn't see any scalp growth for the first 4ish months. Xx
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thank you! I'm so happy you are getting such good results too.
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Thanks Theresa, it feels like it's been a long journey. The long haired pre alopecian me would be aghast at my boyish uneven hairdo but now I am just so grateful that I have hair.- any hair! One thing about alopecia- it really makes you realise that you are stronger then you imagined. X
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Wow, Frida Rupert, this is very encouraging! Thank you for sharing so much of your journey. I know you've left no stone unturned. I have just started xeljanz, I'm on LDN, minoxidil with betamethasone and will start the alegra. I have my first 3 months free from Phizer then my Dr. will go to bat for me against my insurance company. If that doesn't work I will try xelsource or make a trip to Turkey. I am on a strict no dairy, gluten or processed food. No alcohol or caffeine, some fruits but basically cutting all sugar from my diet, too. I also filter my water and try to drink at least 8 glasses a day. I had one nutritionist suggest eating 11/2 cups of salted mixed nuts a day. I find it helps cut the snack craving. I've taken thyroid medication since I was 21 and I'm 67. I suddenly went bald 2 years ago, Au within 1 month. I had just lost my husband and had a big fight with his kids, I was going through a family inheritance dispute with my mom, I wasn't taking my thyroid meds as prescribed and it went haywire, and my life was in total upheaval. I would say it was the perfect storm for an autoimmune attack. It took 6 months of seeing various doctors and research before I began to realize this could be a permanent condition if I didn't do more. This forum has been a life saver and wonderful source for researching just about every option. I believe that we can heal ourselves but it can take years, it took years to get here. What kind of Dr. did you see for the pulse therapy? Was it the same dr who prescribed the xeljanz?
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