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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 Summer2000 on
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My insurance covers Ruxolitinib prescribed by derm - doesn't cover Xeljanz.
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Are you taking xeljanz or ruxolitinib.I think when I see my Endocrinlogist in 2 weeks I will start on 3 a day.Already spent over 6,000$ now got covered through December by Pfizer( my insurance doesn't cover xeljanz either). When do you say this is not going to work?Feel like crying now.had such high hopes even made a little chart up to document my progress each month and it's blank.
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Taking Xeljanz - took ruxoliyinib for 5 months before changing to xeljanz.
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Thanks trying to stay positive let me know if Pfizer will cover the higher dose.started the cortisone shots 2 weeks ago.keep me posted on your progress
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Permalink Reply by Jckah on
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Maybe your alopecia isn't autoimmune related. Maybe it's hormonal or some other underlying cause?
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Permalink Reply by sadele on
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I understand how you're feeling.... I'm feeling the same way. I've already spent a lot of money on Xeljanz, and for some reason, I don't see any growth yet. In fact, the hair I did have, (25% brow and 10% head), has fallen out since taking xeljanz... it's a challenge to stay optimistic. I almost feel guilty feeling disappointed at this point because so many people are so happy taking this medication. I've upped my dosage to 4 pills a day and I'm on day 18 of the upped dosage... at times I feel hopeful and other times, (especially when I look in the mirror), I feel like I've been kicked in the stomach. Perhaps the alopecia is related to something else?? I first developed it when I was 4 months pregnant and after I had my daughter, it completely grew back. But 11 months later, AFTER an incredibly life-changing event happened, it all fell out again... this time turning into AU. Uggggggggggg..... I keep reminding myself to trust God's plan. As challenging as that is, I force myself to keep my mind, heart and spirit focused on that trust. I know it's hard, Football Fan. Are you under a lot of stress? If you need to talk, you can private message me. I think I understand what you're going through...
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Everything you said was perfect so happy for everyone who is growing hair I just wish we all were getting the same great results.I Developed a thyroid problem then about 3 years later also had a very stressful situation and then this nightmare started.Actually everything is good with my life now except for the Alopecia it is stressing me out everyday that goes by with nothing happening.Thanks for everyone's help!
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I'm trying to trust god's Plan everyday but it gets hard. I too have been taking 10 mg since June 19 and nothing it is actually worse. I'm getting very disappointed. I do have a lot of stress in my life lately thinking that has a big part of it. It's hard to not have stress. Happy for those out there that it is working for and praying everyday for us who are waiting!!
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This is so hard! We all have hope, I've been on 2 pills since June and then upped to 3. Very sparse on scalp, 30% eyebrows and eyelashes. Starting to lose hope, so healthy otherwise! Can't imagine this will turn into a full head of hair someday. Ughhhh!
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Permalink Reply by Xeljanzmiracle on
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Carol, lots of people started slowly. The good news is you know it's working! Stick with it, we didn't lose our hair overnight. It took me almost a year and a half to lose all my hair. Some people have been on Xeljanz over 6 months and they don't have any eyelash regrowth. You are ahead (no pun intended, lol!) in some areas and slower in others. All of our bodies respond differently to the drug and we are in different modes of the hair growth/rest cycle.
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http://finance.yahoo.com/news/aclaris-therapeutics-international-ri...
So interesting people!! I think it's finally going to get approved for Alopecia ! :)
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