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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 Patchesforlife on
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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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Frida, first of all I'm sorry this happened. Was yours stress related? Any other autoimmune diseases? I wish we could find out a common thread as to what is causing this and why sometimes we have a small episode and are "safe" for a while and then other times we lose all or almost all.
I found that it takes sooo long for hair to grow when it has to start from literally nothing. When you have lots of hair on your head it grows so fast it seems. We, as alopecians need to be so patient.
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Thanks Suzie,
Yeah it's been a traumatic 2017... just hope 2018 is a bit easier! I think for me what caused it is that I was extremely sick in 2016. Had a massive ear infection- outer and middle, then got glandular fever... on top of colds and flus. Being a mother of two young kiddos meant I wasn't sleeping enough ect. I think for me ill health - especially infection around my head is my trigger. My two minor episodes came after infections in my jaw and an infected wisdom tooth socket... some people seem to be affected by stress, then others there is no rhyme and reason... I am stressed when sick and that's usually why I get run down but I've been stressed out of my brains before and it hasn't happened so it needs the infection/illness with the stress in my case.
Have you been taking Xeljanz? I'm a bit up and down whether I am responding or not. Been on it 4 months and the changes are subtle to say the least. It'll be at least 18 months at the current rate until I have a pixie.... I've never had to start from scratch (aka totally bald) before... just so hopeful it does come back.... I think once I'm 100% sure I am on the road to recovery I will find it easier... I'm still at that- well it looks like something is happening, blond stubble/fluff etc but then the Changes are so minute and slow that I keep thinking no no maybe I'm not responding.... this is such a psychological battle for me...
It's good to hear about other Alopecians having success though. Every time I hear a success story I feel a little better, have more hope and know it's a shared experience... let's just hope Xeljanz and the other Jak inhibitors are the key to unlocking this and become widely available to all Alopecians... but yes I'm trying to learn the art of patience at the moment...
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