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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 Sara on
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Hi Please share his reply with us . It will be really useful especially for kids .
Thanks
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Permalink Reply by Xeljanzmiracle on
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Thank you Hopefinder for that accurate information. Let's hope the cost comes down so our fellow alopecians in Europe can have access.
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Xeljanzmiracle, thanks for your reply. Congrats on your progress! It looks great! I was diagnosed with AA when I was 7 (1988). I remained with AA until 1990 when my dad relocated to Georgia with his job. I've had AU ever since. (My stressful event!) The rest of my family and I joined him in 1991 but I never recovered. My childhood was tough of course (children can be cruel!) So I buried myself in my books and sports to minimize my stress levels. I was able to date girls who saw past my exterior and now I'm married with three beautiful daughters and have a great career in commercial banking. My oldest daughter (7 years old) had a brief stint of AA that broke my heart. I don't want her to go through the crap that I went through as a kid. Luckily it was one patch that grew back with a liquid steroid. Right now, I make too much money to qualify for the hardship program but I will gladly pay up for a cream for her if it comes back. As far me, I plan to take baricitinib when it comes out in 2017. The wait is primarily due to price (analyst expect the drug to cost around 1,300/mth).
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So nice to hear your story! Thanks for your support. Thats great that Baracitinib will be $2,000 a month less than Xeljanz. Its still expensive, I could never afford itl myself. But by God's will I continue to recieve it Free of Charge.
L
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Permalink Reply by sadele on
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Hi All - Quick update. I posted a picture of my progress on Susan's page, which I've been optimistic about. However, as of 2 days ago I've noticed a lot of fall out. I'm praying this is just part of the "cycle" but my fears of watching this new, little growth fall out is sad. I run my fingers through the patches and each time I see these little dark hairs in between my fingers. Not sure why this is happening.. I've been getting Kenellog injections every 4 weeks for the past 4 months and each time I get injected, a new patch of hair comes up. The difference between these times and the last times, ( before xeljanz), is that the hair looked like it was staying in place. Perhaps I'm being paranoid, but it's hard to see the hair fall out when it's been growing for the past 4 months. I've added Plaquenil, 100mg, 3 weeks ago. I see Dr King on January 26th, so I'm hoping to hear more about the topical treatment or if I need to try Jakafi. Just wanted to do post a quick update on my progress.
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I hope it will be okay serinaadale , you should ask ADML as am sure he had some hair shed too so it could just be the hair shed cycle? Have tote changed your diet or dosage ??
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Permalink Reply by Susan McAdams on
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Hi All--
I am flying back to Los Angeles after my appointment at Stanford this morning where I talked to Dr. Ko about shedding, creams, the different JAK inhibitors and side effects, etc...I posted it on a new discussion board I started a couple weeks ago. It's titled "Xeljanz Users...Let's Stay Connected Here in 2016." If you want to see what I discussed (I am a Stanford Trial post-patient), check it out. It may answer a few things.
--Susan
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Permalink Reply by kimberj on
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Hi Serinaadele. I too started to notice some hair falling out a few months back. (This was following a few stressful months.) Some people suggested that it might be just a normal shedding process but now I know for sure that I have had a full relapse. I too will have tons of black hair fall out if I run my fingers through my hair. I have a least 50% hair loss and it just continues to break off at the scalp. What areas still do have hair, are very thin and brittle. I am still on 2x 5mg pills a day of Xeljanz and 2x 200mg of Plaquenil a day. As of this month, I have been taking Xeljanz continuously for 15 months. I take the Xeljanz for Rheumatoid Arthritis but it was a blessing that it was also a treatment for Alopecia.
I am very happy for all of those that have reached full regrowth! I was almost there myself but now Im going back to a wig. As soon as it comes, I am going to shave off the remaining hair. It is too pAinful to watch it fall out anyway. I will post pictures soon.
Best Wishes
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