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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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Oh Merry that must be tough, it's such a time consuming and expensive process. I do think the larger dose has a good chance of working but you must be exhausted as you have been doing this since 2015. Have you done any complimentary treatments alongside- DHT blockers, low dose naltrexone, etc etc? I see you have steriod injections etc but have they tried some oral steriods too? One lady on here said her scalp was only responding with thin fine hairs until she added a dht blocker. I do think the higher dose will work - let us know how you go.
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Frida Rupert, the only other thing that we tried with the xeljanz was DCPC, but the solution was not strong enough to produce any irritation. I couldn't find anyone with 100 miles who could/would compound a stronger solution of it for me, and the Cleveland Clinic Pharmacy doesn't mail it out of state. We just dropped that treatment. I know that cyclosporine at a high dose works for me, but it affects my kidneys. I hope the increased xeljanz does it. I'll let you know.
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Merry, may I ask whom you see as a doctor at the Cleveland Clinic? I have seen Dr. Bergfeld for 10 years, and inquired about xeljanz last summer. She prescribed DPCP and I have used it off and on with ups and downs. I would like to find a doctor who will prescribe Xeljanz in the Chicago area, as that is closer to me, or the Cleveland Clinic. Thank you.
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i actually see Dr. Bergfeld. I'm surprised she hasn't tried xeljanz for you. It's especially surprising since you asked about xeljanz. Good luck!
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Merry, I had quite a bit of hair when I saw her last summer. I have lost more than half of it since then. Did you have any hair when you saw her. The first time I met with her, I had none - AU. Then, I have had regrowth for a few years. Now, it all seems to be falling out again. DPCP is so hit or miss in my opinion. Also, did your insurance cover Xeljanz or did Dr. Bergfeld's office need to go to bat for you to get it prescribed? Thanks for taking the time to answer so many of my questions I really appreciate it.
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Solutions, I had no hair when I first saw Dr. Bergfeld. I had already been seeing other doctors for a few years and had tried many other things. The previous doctor sent me to her specifically because she knew that Dr. Bergfeld was on the cutting edge of xeljanz research and usage. Dr. B's office had to go to bat with my insurance company. She told me that if I have trouble getting the higher dose, she will go to bat for me again.
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I wish I could clone Dr. Bergfeld and bring her to Chicago. What dosage are you on right now? Did you start with 2 pills a day of 5mg.? And, how long have you been on the meds? Also, how is she monitoring your blood work if you are not in the Cleveland area. She has always had me do my blood work locally and then she prescribes the treatment later once she receives the blood results.
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Yeah they tried DCPC with me, it was so messy and hard to apply etc that I gave up. I only was on cyclosporine for a few months with no results. When I changed from a dermatologist to my immunologist he got me onto xeljanz as he said it was the immunosuppressant with the best chance of working and he didn't want to just go through the motions of trying other immune suppressants which could cause me more trauma when we'd probably end up at xeljanz anyway. The one thing I noticed with cyclosporine was it made my shakes a zillion times worse. I normally have a bit of a shake - I'm one of those people who is constantly tapping their legs etc, but cyclosporine I could barely put my password into the printer at work cause hitting the right number required precision I just couldn't do with my hands trembling so much. No problems like that with xeljanz.
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hi Frifa do DHT blockers help alopecia?
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I think they won't grow back hair but they *might* improve the quality of the regrowth. They tend to work better on guys but sometimes work well on women too. There was a young lady on here who stated they helped thicken her xeljanz induced regrowth. They are generally cheap so worth a try if you are needing to thicken regrowth... I'm kindof of the school that Alopecia either goes into remission naturally ( which becomes more unlikely with AU and AT but still happens) or has to forced into remission by immune modulators/ suppressants and/or steroids ( which also are immune suppressants really...). That said I do believe ( no scientific reasoning really) that complimentary stuff such as dht blockers, minoxidil, LDN, diet, vitamins ( esp biotin, iron, b12, etc) may improve the quality of the regrowth. People who have alopecia tend to have other immune issues so sometimes complimentary meds might assist overall health.
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