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My Story- My Results on Xeljanz under the care of Dr. King in CT-Remission Status
Hey guys, just thought i'd share my story and I hope it is helpful for all of you! It all started in May 2011, I woke up one morning with a quarter size patch of hair removed from my head. I had no idea what started this at the time or why it was happening to me. Fast forward a few months later I was almost completely bald and diagnosed with what was initially alopecia areata which turned into Alopecia Universalis. I went to doctor after doctor, with little answer until one morning my former boss at the time, well knowing my story and struggle with alopecia told me about a case on Good Morning America that may really help me.
I went home as soon as I could that day and found any info I could. The news story was about a young man named Kyle who had plaque Psoriasis/ Alopecia Universalis who had begun a trial of Xeljanz for 12 months under Dr. King's care and completely regrew his hair back. I contacted Dr. King and was able to get an appointment, this was back in 2014. I was so excited, nervous and dreaming of a life where I wouldn't have to wake up early every morning to draw my eye brows on, wear wigs and worry about this deep insecurity that I had since all of this happened to me. For many of you, this is relatable and my heart goes out to you guys. It gets better, I promise.
For forward to today 2018, Being on the medication Xeljanz on since 2014, I recently saw Dr. King, He had been slowly supporting my decision to take the medication sporadically and after only taking 4 pills a month which in his words (does absolutely nothing) We decided to embark on a journey medication free. I am in remission and so grateful for it. Yes I get spots but they are very small and few to be found. I cannot believe the progress I had on this medication. If anyone has questions or is looking to get on it, I have several months supply left that I will not be needing if anyone is interested in acquiring these bottles please message me, they are unopened and fresh within their shelf life. I know the hardship that goes into getting these bottles covered under insurance, and how expensive it can be, I would hate for this all to go to waste since I will not be utilizing them all in time.
Thank you so much,
Dani =)
Replies to This Discussion
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Permalink Reply by Sephardigirl66 on
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Dani,
thank you for sharing!
My daughter has AA and has been pretty devastated by losing her hair. She also has Multiple Sclerosis. One thing I found out today which made me hopeful is that there is a pharmacy in Philadelphia called Chemistry Rx (855-790-0100).
They are a compounding pharmacy so they take the Tofacitinib (Xeljanz) and pulverize it and then put it into a fat based cream formula that can be applied to the bare/bald spots on the scalp. Not as effective as the oral but without the immune suppressant issues.
AA is an autoimmune disease like Multiple Sclerosis and other disorders like psoriatic arthritis etc. as well as a T cell activator (antibody which is supposed to protect us but ends up attacking us) and can come and go over the course of an individuals lifetime.
In my daughters case we don't know what the future hold so we are praying for medical interventions that are just in clinical trial phase right now.
You mentioned Dr. King. Did you find him helpful in regards to recommending drugs as intervention for the disorder? You indicated you were on Xeljanz. Did you have any infections etc? I am really interested in hearing the rest of your story.
BTW you look amazing before and after!
All the best,
Leah Butterfield
Washington DC
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Hi Dani! Thank you so much for sharing your story. I went AU in the space of three weeks in June 2017, and have been struggling ever since. I just started Xeljanz a few days ago, and I am terrified it won't work. I would LOVE to get your Xeljanz supply from you - my insurance won' cover me - and hear more about your history etc. I am also a patient of Dr. King, but am being followed as well by my local doctor in Montreal.
I will send you a friend request!
Anna
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