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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 Xeljanzmiracle on
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Singh, 80 percent vellus hairs on your scalp means 80 percent REGROWTH on your scalp. Growth is growth. It will ALL turn dark eventually. You keep thinking you are slow, but you are not. How many other people on here have had 80 percent regrowth on their scalp in only 8 weeks? Very few, not me. Some of us had to up our disease to 3 or 4 ills a day to get the results you are getting on 2. Try to look at your regrowth in a POSITIVE WAY. Did your hair all fall out in 8 weeks? Mine didn't. It took a year and a half to lose every single hair I had on my body. So if it takes a year and a half for me to get it all back and have the length I had before, is that unreasonable? We might all be taking Xeljanz, but some took Methotrexate and other steroids before they started and their systems were primed for faster results. Some are taking cortisone shots, prednisone, or using topicals like Rogaine, etc. Some of us are taking tons of vitamins, like Biotin, eating more protein or avoiding gluten which definitely affected my hair loss. Why do we expect THE SAME IDENTICAL RESULTS when we are all different genetically, etc? Let's keep celebrating that Xeljanz is working for MOST OF US, without adverse side effects. We are SO blessed to have hope that all of our hair will grow back, EVENTUALLY.
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Permalink Reply by singh on
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Thanks it's just its all over but not terminal. That is true it took a while for it all to come off. I have to now changed my diet I have gone more vegan approach. I have Pm you xeljanzmiracle
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I sadden am French I use a translator it is not top I said by adding ruxolitinib in cream for soon I think that you will have all of your hair
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How are you doing trying to be vegan? It's hard for me just avoiding wheat products (gluten) because its in almost EVERYTHING, including soy sauce, salad dressings, processed meats and sausages. I can't concentrate on anything else, although I'm gradually cutting down on sugar now, little by little.
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Permalink Reply by AlopeciaDestroyedMyLife on
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Hi everyone,
Apologies for my delayed posting.
Here are this months photos . It's really coming in !
I've been taking 2 pills a day for the past few months and have noticed no difference in growth rate from 3 pills a day. That's not to say the initial increase was not beneficial . The increased dosage helped kick-start my hair growth but was no longer necessary once my body had stabilised.
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Permalink Reply by Giusep on
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WOW Owen, your results are amazing!!! I am so happy for you!!! Congrats!!! Have a Happy and healthy holiday's/ new year!!!!
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Permalink Reply by Susan McAdams on
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You're on your way! I didn't have that much regrowth at 3 months. Things started steadily progressing for me in Month 4, then around Month 8 it really kicked in! I was always on 2 5-mg Xeljanz pills per day, with no other treatments. I'm still on the same dose, and at 10 1/2 months in I have 95% back. My wigs are in storage. I'm sporting. A nice pixie do. I feel great! And I like the short hair look--it's so easy and very trendy right now. Can't wait to see how you progress. Have a wonderful holiday with much to celebrate!
--Susan
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Wow remembered when you started. It's almost miraculous. Miraculous would
literally be the week after. Your results should inspire the guys who don't get overnight results.
Having said that Xeljanz certainly appears to have been a worthy investment for you.
2 Years ago the best derms would have deemed your condition untreatable but now your Alopecia is
contollable like diabetes.
2 or 3 years ago I would probably have laughed if someone said all these people including you would be
getting such significant results from a pill or 2 a day.
With all the other Jak inhibitors being mentioned in last few months I anticipate a great future ahead for Alopecians
well, as soon as the prices come down which won't happen I fear until Pharmaceutical firms lose their patents.
Xeljanz patent expires in 2021 I think.
Seasons greetings ADML and once again congrats!!!!!
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Thanks Lea, for your encouraging words and thanks Hope Finder for using the word "miraculous" to describe ADML's regrowth. I'm glad I'm not the omly.one who feels that way.
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