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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 gcobb on
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Don't know what this means for this drug getting approved for alopecia or the impact on insurance covering but yesterday aclaris filed an application for an investigational new drug for x to be officially tested for safety.
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It will be not be a guarantee that the pharmacy your insurance carrier works with will carry it, but it's a start in the right direction. As more of the JAK class drugs get released, prices should come down and availability should go up. But we need curative treatments and not maintenance. I firmly believe that curative treatments and medications are on the horizon as they will be the only true combatant against extraordinarily high healthcare costs.
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I have been on 20 mg a day for 14 months. I have no side effects other than high cholestrol which I will begin treating with statins next week when I see my GP. My hair has come in, but it is still very fine and thin. I got kenalog injections in my scalp on Monday and my derm prescribed a topical steroid called Clobetasol hoping to increase the volume. My labs have been good other than the cholesterol and I have not been sick at all.
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Great Merry "
I'm so happy for you
What about your lashes and brows grow ?
And did you try before 10 Mg ?
Thanks Merry
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Yes, my lashes and brows have regrown as well. I started on 10 mg but after 6 months
i still had no regrowth. I went to 15mg and began to see regrowth but it was very slow and sparse. So my doc added 5mg. I hope this information helps and I hope you are doing well with regrowth and good health.
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Hi all, just sharing an update...
My background: 25 year old female. I rapidly lost 95% of my scalp and body hair during June and July of this year in a diffused pattern (picture 1). I had no personal or family history of alopecia.
I decided to shave my head August 7 (picture 2) and began taking Xeljanz August 15.
I did 6 weeks on 10mg a day. Blood work was normal/excellent. Did not see much progress.
Upped to 15mg a day for 5 weeks. Started to see a little bit of unpigmemted fuzz.
Upped to 20mg a day for the last week (aka now up to 12 weeks total of Xeljanz). Starting to see a few pigmented hairs (picture 3). No eyebrows or lashes.
It's slow... but it is progress.
Depression/anxiety is up. Gained 18 lbs in 3 months.
Other important info: was a vegetarian for 8 years when I lost my hair. I am not any more. My Ferretin serum is now up from 22ng to 105ng. I take biotin every day, I use 5% women's minoxidil twice a day, and use a theradome laser helmet once a day.
I am enrolled in the Xelsource hardship program.
Engaged and trying to set a wedding date.... :( - Attachments:
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Hey Katrina your defo on your way to regrowth! As for the weight gain just maybe up your exercise routine and watch your diet. Keep us update,
Kind regards
Singh.
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Katrina,
This could possibly be that you are on your way to regrowth. I am not sure if we talked about this privately but I also was engaged three months prior to my hair loss and was planning a wedding. We really do have similar stories. I look back at my wedding now and I wish I would have waited to plan mine. I did it right snack in the middle of this and I think I would've enjoyed it better if I let myself adjust and cope to this situation better. It can also be stressful planning one. If I can give you advice, don't rush. It will want to be something you enjoy. If you are feeling depressed and anxious you also need to work on yourself.
I wish so badly I could take everyone's pain on here and erase it. I hate this awful disease and I pray you start to see some really great growth in the days and weeks to come. I have faith that you will! Hang in there sister your not alone.
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Permalink Reply by Suzie on
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It seems that everyone that is seeing growth is on more than the recomended 10mg a day. Is anyone seeing any results with just the 10mg a day? I have been on the 10mg a day for 3 weeks. Hoping this stops the thinning and starts filling in my patches soon or I will have to get a wig.
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Permalink Reply by Jcortez05 on
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I am ..I was on 5mg twice a day and grew all my hair in less than 6 months but then it started thinning when I went through a really stressful time about 1 month before ... but then in July I started 1 daily dose of 11mg and it's still growing .. shaved my head in aug due to the severe thinning and it's all grown in except for a spot at the back of my head
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