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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 kimberj on
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Agreed!!!
After being diagnosed with several autoimmune diseases such as: RA, Hashimoto's, Gluten Intolerance, and Alopecia, I pray for ANY amount of normalcy I can get!! Oh, I forgot the Vitiligo that I have had since I was 5.
Two years ago I thought I was going to have to give up life as I knew it due to RA. The pain I went through everyday was awful. I could barely complete every day living activities. At one point I couldn't even open a bottle of soda. Then all my hair fell out on top of that!! I felt like giving up and never leaving my house. My rheumatologist started me on Plaquenil and I started to feel some relief and improvement. My hair started coming back in pure white (I didn't care! Hair is hair!). Although I was doing much better, I still had residual pain in my knees, elbows, and hands that made activities still difficult. Some things I had to avoid all together. My life was dictated on my ability to move and if I was having a good day or not. Then it happened, my Dr started me on Xeljanz. It took a month or two but I began to get even better. Now my life is mine again! I am still careful and guarded about protecting my joints but now I can go for a walk and open a bottle of soda.
I have been at the mercy of my Dr for Xeljanz for 8 months now. I worry everyday that I will run out cause my insurance STILL denies me. We are still fighting for approval. Either way, I am grateful for the chance to experience hair on my head again and to even shave my legs. I am grateful that I can open my soda all by myself and go for a walk. I am grateful for the 8 months of life that I have been able to experience all because of a drug. I am willing to take it for the rest of my life if I am given the opportunity. If not, it was all worth it just to have it all back for a short while.
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Permalink Reply by Football fan on
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So happy for you!You put a smile on my face.On xeljanz for almost 10weeks hope to start seeing some good results soon.I have Hashimotos too about 3 years later I started losing my hair I believe it's all connected.
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Thank you very much for sharing your story and latest update. You made my week! Our daughter is starting Xeljanz this week and we have our fingers crossed. It's such a wild card in terms of response...but based on everyone's stories...it's worth a shot. Keep up the positive spirit and I hope you win the battle with your insurance company.Has anyone heard when all the Trials will be completed? Hopefully some momentum builds to have this drug approved for alopecia. Take care!!
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So happy for you!!! I actually love the mix of white and black hairs you rock it well! Lol. Very surprised honestly to hear they still won't cover you considering you actually have RA and it sounds like you have a sever case. Just goes to show you how these pharmacy companies and insurance gigs make off with our money!
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Hi Kimberj, so happy for you, looks amazing. Wish we could send your post to all the stupid insurance companies who are denying coverage for this drug. It is hard to believe that even with your severe RA, they are still denying coverage.
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My insurance company Anthem Blue Cross won't cover Xeljanz period even for RA!Its not on there list of covered drugs.
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Permalink Reply by AlopeciaDestroyedMyLife on
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Wow Kimberj!
Big improvement.
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