Alopecia World
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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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AW: Other discussions on Xeljanz / Tofacitinib
https://alopeciaworld.com/main/search/search?q=Tofacitinib
Replies to This Discussion
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Permalink Reply by Jcortez05 on
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No I'm not taking anything else with it .. I hope it doesn't make mine fall out :-/ I'm also trying to eliminate foods that I'm allergic / sensitive too , like eggs soy dairy wheat
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Permalink Reply by Suzie on
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You really should talk to your doctor about taking the folic acid with it or at least google it. If I remember correctly I had to take folic acid along with the Plaquenil.
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Permalink Reply by HS on
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Every 3-4 weeks I get Kenalog (steroid) injections on my scalp and in my eyebrows. I started this in conjunction with adding Plaquenil to my medications - and between the kenalog and the plaquenil, I have had a blast of hair growth everywhere.
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Hi all,
I am new to the site and was hesitant about posting but I have had (so-far) success with Xeljanz and wanted to share my experience in order to hopefully help others in similar positions.
Background: I had AA approx three years ago, all the spots filled in within a few months. But a year later, I began to lose ALL my hair, eyelashes, eyebrows, etc. About a year before my AA began, I had experienced a death of someone very close to me, which led to extreme anxiety. I am convinced that these traumatic events began my hair loss.
Xeljanx Experience: I began Xeljanz approximately 6 months after my AU began. I started with 1 pill, for about 6 months. I saw a little bit of vellus hair growth on my head, but not enough to continue with just 1 pill. It has not been about 5-6 months since I began taking two pills daily and I almost have complete growth on my head, eyelashes are continuing to grow and my eyebrows are sparse, but they are beginning to fill in. My body hair has returned mainly to my legs, but my armpits and arm hair has still not began to grow. I have not experienced any side effects, and continue to get bloodwork every couple of months. I apologize for the approximate timelines as I have not been keeping exact track of term appointments, etc.
I hope this made sense lol! I will be happy to answer any questions :)
The two pictures below are from a week ago (5-6 months of two pills daily).
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Permalink Reply by Toxicmosquitoaf on
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Amaznig growth girl, best of luck xx
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That's amazing xeljanz girl ! So happy for you am in a similar boat to you although I have had alopecia aa and totalis a lot longer. Can I ask what bloodwork you get tested for as I feel it is intresting to see if people on Xeljanz are getting the right bloodwork done.
Kind regards
Singh
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Honestly, I am not entirely sure but I think most of the bloodwork is focused around my blood count. I am going again in a few weeks and can let you know exactly then!
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Thank Xeljanz girl it's just so everyone on can see if they are getting everything checked for.
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Tapering the dose on Xeljanz
I am on Xeljanz for Alopecia and have tapered the dose, thought I would share as it may be of interest to some people on Xeljanz, so decided to share.
Background (will try to keep it short, but feel it is relevant). I was near Alopecia Totalis around May 2010, when I started methotrexate on 25mg weekly, which resulted in near total regrowth (tho not as dense as before I lost it) . Overall methotrexate has been very successful for myself, however generally when the dose of methotrexate was tapered it resulted in new patches appearing, It also required some short tapered doses of Prednisolone to help regrowth with this loss. Around August 2015, the methotrexate, I feel was losing it effect a bit and patches were appearing again. I then decided to try Xeljanz and subsequently arranged and visited with Dr King. If anything it would give my body a break from the methotrexate.
I commenced Xeljanz on 2 x 5mg tablets daily, at the start of January 2016 and any patches soon grew back (including half an eye lash which I had been missing for 8 yrs). I visited Dr Brett King again in April, and since April, I have been on a alternating tapered dose of 2 x 5mg one day, and 1 x 5mg the next (three tablets over 2 days. Since the start of July, I have been on 2 tablets on Mon, Wed and Fri, and 1 tablet on Tues, Thurs, Sat and Sun. I am pleased to report that so far so good, no loss and my hair is also as thick as it used to be. Also no side effects and all blood work has come back spot on, with only slightly low Cholesterol level noted. If anyone has any questions feel free to ask. Thanks
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Very promising news Villa Fan thanks for shareing. Keep us updated and good luck to you
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Hello everyone,
I just wanted to give you my second month update with Xeljanz.
I'm taking two pills a day.
No side effects yet. And I'm gonna do blood tests soon to make sure everything is normal.
All the bald spots on my head are starting to fill in. Hair is still not too dense in those areas, but I'm glad there isn't any spot left that's completely bald.
Minimal growth in eyelashes (about 8 hairs in each side). Noticed increase in body hair (chest and stomach area) but not too much in arms and legs. Eyebrows keep growing and taking their natural shape (about 180 hairs on one side and about 120 on the other side) but today I noticed 5 eyebrow hairs that fell out this morning from one side. I hope it's nothing to be concerned about. I'm switching to the turkish Xeljanz starting from tomorrow.
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