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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 IcarusAlopecia on
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We probably go to the same doctor. Dr. bordone?
Unfortunately, I don't qualify for xelsource.
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That's who I see! I added you as a friend on the website. She's amazing. I'm just super confused as to wether or not xelsource requires us to go through state appeal before getting approved through them.
I am finishing up my second month next Monday and I have amazing growth on my scalp.
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Xelsource is a financial aid program to get Xeljanz. You have to meet a certain criteria (income, no insurance, etc.)
It sounds like you have insurance and are appealing a denial which is different (and like my case). I have Horizon Blue Cross.
Even though Dr. B added a letter and studies, it always helps to add your own letter and add keywords phrases like, "my quality of life has suffered" "emotional distress" etc etc. Not to mention, you can always add your own studies (I found plenty on pubmed). I strongly advise doing that if you still can. I have had two denials, one for Xeljanz and then one for a major surgery overturned over the years at the state level.
Anyway, glad to hear you are having growth! I did, too! pretty much 99%.
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Thanks Icarus. I'm on my second denial now and because I have insurance xelsource will be looking into all aspects.
I hope the NYS over turns aetna. I didn't include anything. Dr B used her own studies.
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I was supposed to get my second appeal decision today and something screwed up and they told me the date now is March 25th.
Aetna is trying to figure it out but is 1 level of appeal fine for the NYS appeal or do I need 2.
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Hi guys,
photo time - this week I've noticed the hair has darkened up and is getting thicker. There are still some bits that are thinner and lighter then others but it is getting more "normal" looking. I am happy now to walk around the house without a head cover and am building confidence in showing some of my closer friends.
It it has been a weird week. I feel my hair has progressed really well BUT I have noticed now my anxiety about losing is up too. It's almost like now I have more to lose if i do lose again... ugh... I know you guys understand- at first the relief of growing hair is so great you don't feel so anxious and then all of sudden you get very worried about loosing it again.
Anyhow I apologise for the quality of the photos - my selfie anon head shots are not a strength as you guys can see!
ps sorry if I doubled up on this post. I hit reply and it disappeared and so I reposted! Happy growing everyone xx
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Hi Frida ! Such amazing growth ! :) Forget about losing go live your life with a head full of hair. If only they just approved it for alopecia
kind regards
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Thank you singh! Yes we need to get it approved and accessible for all alopecians. I guess sharing info and lobbying at whatever level we are able is the first step. I keep telling my immunologist and derm that if they have any other alopecians that are curious to send them my way to see if I can give them info and insight into getting treatment. So far no takers but i do hope that what I'm sharing on here is helping people making choices about treatment!
And I am enjoying rubbing my head a lot now!
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Looks really good.
Enjoy to the max. We deserve this.
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Thanks Return to Life,
you were really helpful in giving me info and confidence in the days when I wasn't seeing much progress! Enjoying my fuzzy almost hairy head!
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Yay! Thank you Sadele, the scalp took its time but I think perseverance worked!
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