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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 John on
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Thank you for this suggestion of the Xeljaz Co-Pay Savings Card! Do you go through the Pfizer Website or is there a link to where you went to get it?
Yes, we are working on an appeal through Pfizer Customer support as Blue Shield of California has denied our appeal even after the Peer-to Peer review with our son's doctor. We are now also filing Grievance with Blue Shield which will take some time as well and may even take it to the Insurance Commissioner if necessary.
There is legislation in California which does not allow for insurance companies to deny off-label use of an FDA approved drug for other treatments than the intended use so hopefully that will get us some traction too. Anything similar to that in Illinois?
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I just Googled "Xeljanz co-pay card" and was taken to ra.xeljanz.com. From there, there is a "register now" button to click on at the bottom of the page. Once your card arrives in the mail with a welcome kit you activate the card. If my memory is correct I wrote that my son was 18 on the application. Best of luck. It is unconscionable that a human being would deny the opportunity for a boy to have hair. Hair. I never thought I would pray to God for hair...and the opportunity for my son to live the life of an ordinary 17 year old boy.
I do hope this works for you and your son. My son has his life back since going to college. Nobody knows him without hair and it is a fresh start. I feel like the boy I knew has returned. I am so thankful and so hopeful for you and your son.
I don't know of Illinois law. I just know we paid nearly $4000 out of pocket per month for two months and used the first of three free trials on the Xeljanz card before the approval came through.
Your doctor should be re-appealing. Mine said it is customary to have to jump through all the hoops before approval.He predicted he would have to appeal again.
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hi all. seeking your opinion. Do you think responses on xeljanz will have to take it for rest of their life?
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I think if I get full regrowth for my own peace of mind I'd wanna stay on it on some dose even if it's small. Then psychological impact of losing it again is just too risky for me to go off it. I think maybe you can wean down the dose but it would be too risky to go off it completely in my personal case and opinion...
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i totally understand but are we risking othelr diseases by doing so :(
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Not a doctor here, but my impression is that Xeljanz compromises your immune system leaving people taking the medicine more vulnerable to colds, flu etc.
But I am not sure of any other diseases.
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Permalink Reply by Suzie on
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Unfortunately, I have been on biologics for over 20 years (due to RA and now RA and AA) and I RARELY get sick. I pump myself with lots of antioxidants, supplements and I make sure my diet is very healthy; I wash my hands a lot as well as use a sanitizer at grocery stores, etc.
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Thank you! That is so good to know.
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My son's doctor said eventually he will be weaned down but not weaned off. One commenter on this thread said he grew his hair back, stopped taking the medicine and lost it all again. Worst of all is that he said it was harder for him to grow his hair back the second time.
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Yep that's what I've read - it's a treatment not a cure. I do worry about the health effects but psychologically if my hair comes back I can't risk it. In my personal case I had an extreme fear of losing my hair before alopecia ever hit me due to a childhood friend getting struck by the disease when I was a kid. As my husband has commented, for me cancer (even though that involves hairloss too at times at least I'd feel like I knew why) would be easier for me to cope with. I almost passed away when I gave birth to my second child- that I was far less traumatic (still traumatic) then this. It's very much a personal thing, some people seem to be mentally equipped for this condition, others, like myself, just find it so so traumatic that we are happy to run to gauntlet re other diseases to have certainty with this condition.
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when did you lose ur hair? what is very quick?
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My hair loss started in dec 2016. It was pretty much gone in 5 months and I started Xeljanz in August/September. I have a small 2 cm x 2 cm patch on the top of my head with normal colour hair and starting to get short stubble fine white hair over about 70% of my scalp. Also my eyelashes seem to be coming back... have about 6 normal lashes on one eye and what I think is stubble on my other. There is some hair on my eyebrows but I had them microed in before I got alopecia as I wanted a more dense appearance so it's hard to tell exactly how much I've lost. My down there hair fell out out but now have got white fluff all over my bits (excuse the TMI). I'm not sure if I am responding to Xeljanz- some days I think I am and others I'm like nah... definitely a slow responder. May go up to 20 msg but will chat to my immunologist first. Still have leg hair (though I never was very hairy on my body) but my arms to my wrists seem to have fallen out (i didn't really notice as I had very fine blonde hair on them).
It's pretty hard- got a 3 year old son and a 6 year old daughter. My daughter has said she doesn't want to see under my wig which I respect as I understand it could be a confronting image for her and I get a bit down that my son may never remember me when I did have my thick long brown hair....
Prior to this episode I had two minor areata episodes which resolved in 3
Months (I was so lucky). I thought that I may go that way this time but alas nope....
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