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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 DJ88 on
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I haven't been here in a few months. I was wondering, in these past couple months since about September, has Xeljanz become anymore accessible or is it still hard to obtain/ get covered?
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Permalink Reply by Xeljanzmiracle on
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Thanks for adding me as a friend DJ88. One thing new is that the Pfizer co-pay card anount went up $4,000, so people can receive $12,000 worth of FREE Xeljanz per calendar year now. And they actually increased the amount last year, so some people who paid out of pocket in 2015 were able to get a refund.
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Permalink Reply by Nicolas on
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Xelianzmiracle i read you are using rogaine(minox 2%) do you think it helped you? i have whit meditation and mesalazina a good quantity of hairs and i was thinking to add also minoxidil...now i meet there are also incredible concetration : 15% -20% and also a cream of 30%
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No, Nicolas. I was interested in trying it but I haven't bought it yet.
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Katiegirl has been using Women's Rogaine with great success
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Thank you Miracle i bought minox 5% if it work i'll try more concetration...i hope all here can ha ve a big miracle
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Hi all, got some news! I received a refund from the copay card since the amount was increased last year. Very exciting to get back $2500!!! My insurance is United Healthcare/Oxford and they cover most of it after I won the external review. This year I should be getting it all free since my copay amount is less than the $12k covered by the copay card! I've been back on 2 pills/day since September/15. I was taking it previously in February when I started 2 pills/day for the first month, then we reduced for the remaining 2 bottles while we were fighting insurance. I was off completely for about 3 months, but I didn't lose any of the hair. It's frustrating being back on it and not seeing improvement of the remaining spots.
Dr King is doing a trial on the Xeljanz topical. I got mine and started it a few weeks ago applying only one of my eyebrows/eyelashes. I have not seen any progress, but it's too early. Also started on men's Rogaine and added a high dose of prednisone in between Xeljanz. I'll go back to Dr King in March. Hope by then something works so we can decide on how to continue the treatment. Also started taking 10.000mcg Biotin, maybe that will boost the growth of the existing hair and help cover the remaining bald spots. It's a great regrowth considering I was AU for over 15 years, but it's not enough to go out without a wig. The view from the top is great as you can see in the pic, but both sides/front still need a lot to fill in. I also have one bald spot in the back.
Only side effect I'm experiencing is Acne. - Attachments:
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image.jpeg, 1.4 MB
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LoL I think you can go back and delete the photo :)
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Jcortez05, it took about 4 months the whole process in between appeals, denials, and finally external review. It would be a little faster, but I was getting very discouraged and delayed submitting forms because I had to attach pictures, write a letter, so it was very time consuming.
Dr King had started this trial when I saw him last December, so I asked to be part of it and I had to pay for the cream, which costs about $300 for 30grams. There's no data on it yet.
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Xeljanz2015,
Since you're only applying it to one eyebrow and eyelash, approximately how many applications can you get from 30 grams? Thanks
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Dmac198, Oh I'm also applying to a same small spot on scalp. It's 2x daily. I only need very little each time, so I guess it can last a few months.
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