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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 Lori on
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Exciting I see growth in your picture! Good luck and congrats on getting the hardship card!
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Can some one please tell me all the bloodwork needed to take xeljanz as an going doctors to today and I need to know plz! Also what is it tested for? Is it to see if your infected or immune to xeljanz?? I know it's Lipid profile, TB and CbC anything else ? Thanks
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I just got back from Cleveland Clinic. My doctor says that only two of his alopecia patients have not responded to Xeljanz with hair regrowth including me. The other non responder did get her lashes and eye brows back, but no scalp hair yet. He said some patients with AU have had regrowth with a low dose (5mg 2x per day), but some have needed more. He gave me two prescriptions this time. One will be used with insurance (which has been paying 100% since I met my deductible) and the other script will be used with the copay card and not sent through insurance. Insurance has already denied the extra dosage, so we will try this route. My doctor said that Xeljanz has been working to reverse vitiligo in some patients as well. I pray that I respond to this higher dose! Keep giving us updates folks! I love seeing your progress!
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I think the higher dose should work for you Merry. I was very slow also, but as soon as I started taking 3 a day, it was like magic, the hair really started coming in. Are you taking 3 or 4? Good luck and keep us updated.
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Thanks for the encouragement, Starshine! I will take 3 per day for one month and then go up to 4. I guess that if I start getting hair on the 3, I will stay on that dosage.
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Hi Merry and Starshine at 4 and a half months and not responding on 2 pills a day.Merry how many months have you been taking 2 pills a day and any growth anywhere?Starshine how many months were you on 2 pills and how fast did you see growth when you switched to 3pills a day where is your growth at now.will see my Doctor in 3 weeks and will have to up my dose.I never lost my eyeblashes and have sporadic growth everywhere except under my arms
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Well got back from a 6 day vacation today and just looked into my makeup mirror and noticed my left eyebrow got a little more growth and the right definetely lost hair.Very strange you would think by now nearly 5 months into this any falling out would be stabilized!
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Hi Football Fan. I was on 2 for 6 and a half months with very fine vellus growth on scalp, nowhere else. Been on 3 for one and a half months with full scalp coverage, eyelashes, brows and arm hair. I did get injections too which may have helped. Still all white though, but getting thicker as the days go by. I am really starting to wonder if it will ever get color. Still, I am so happy just to see actual growth. If you could just up the dose for a little while, I think it would kick start it.
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Football fan, I have been on 2 per day since March 11, so just under 6 months. I have had no regrowth anywhere and I am AU. My fingernails were very involved and were painful and shredding, but since I've been on xeljanz, my nails are completely normal as the old nails grow off so I know it is having some effect. Good luck! I hope we're both posting pics soon!
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Update.
My son who is 13 was denied his initial appeal via BCBS. Dr King's people will attempt a secondary appeal. They informed me 90% are denied during the first appeal. I have friends in Turkey fortunately so that is avenue worth exploring.
Keep up the good fight everyone. Thank God for this forum.
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Permalink Reply by Panja on
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I also tried Xeljanz taking 2 tablets daily . I have noticed changes within one months of little hair growing back at first. Now im In months 4 and i have a full head of hair, eyelashes and eyebrows and cant say enough good about starting me on Xeljanz. I have developed Arthritis and my doctor had to jump through lots of hoops for me to finallly receive the medication but it was all worth it and i couldnt be happier.
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