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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 Suzie on
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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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Permalink Reply by Frida Rupert on
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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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I understand. My son was a minor when he started Xeljanz and there is minimal to no research and literature on it for children. When it was offered I gave him the green light risks and all.
And I still believe he should be taking it as he does. The medical risks are minimal, the psychosocial setbacks are close to 100%.
It's a no-brainer in my mind.
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Dear Christopher's mum,
Yes for me if I continue to respond and can continue to get a affordable source then I will continue indefinitely. Most of the academic literature suggests the side effects are manageable and/or not really too significant. Indeed one study I read there were more negative health outcomes unrelated to alopecia amongst the placebo then the Xeljanz takers...not to say it hasn't got effects but, as you very wisely stated- psychological health is of great importance and impacts on other aspects of our health too... to a significant degree.
Also I feel it's important for me to do all ican to find a solution given that there does seem to be some genetic aspect to the disease. The only thing more heartbreaking to me then this happening to me would be watching this happen to my son or daughter without being able to offer a workable solution. In that regard I totally admire you as a mom supporting your son as you do. We want the best for our kids and if this is a solution and I've gone before them then I know what to do if it strikes them.
Ugh... just wish more research and more affordable solutions would become widely available to the alopecia community in general. It feels like there is a solution out there but the backing to discover it is lacking...
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On a bit of a hopeful note re research....My son's dermatologist said a lot of research is being done for alopecia areata. He didn't say this next part, but I think if alopecia areata can be solved so can male pattern baldness and BOOM! It's a financial windfall for whoever discovers it.
I have vitiligo so I think my genetics contributed to my son's AA. And I do feel guilty about it.
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Yes it's hard with genetics. We can't do much about it. I think if I was alopecia free I may have considered another child but just feel don't want to pass these genes on and really don't think I can cope with the stress of alopecia and the stress of a newborn child. Anyhow I don't birth very easy, lots of complications and very high risk so alas I think my two are my meant to bes... that said I am the only one in our known family history on both sides that has had an obvious autoimmune disease so just my luck...
That said your son is extremely lucky to have such a loving and supportive Mamma! You sound like you love him so much and have done everything to help him cope with this! That's amazing and I hope you realise just how fantastic you are as a mom realising that this is not just "skin deep" - it has ramifications for our physical and mental well being.
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Hello, Christoper's mom:
I don't think that you should feel guilty about your gene. Nobody is perfect in this world. You are an amazing mom!My daughter is Teen and going to try JAK inhibitor. Thank you for sharing. Doctor indicated that she can switch to a safer drug or more effective topical JAK hopefully in the future if she has to take it forever. All the best
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Thank you for the kind words. I am sure there will be safer options for our kids and others in the nearer future. Good luck to you and your daughter. Keep us posted!
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Permalink Reply by DJ88 on
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Is xelsource still covering this drug for people making less than 90,000 a year?
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I just re-applied for the hardship program and they told me that if you are married, the cutoff is 64,000. It used to be 90,000. Not sure what the cutoff is if you are single.
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i dnt know if any of u have heard but my dermatologist has pointed out that there are new findings in Japan that Alegra helps for alopecia. Has anyone else heard this? I have heard this twice from two distinct sources
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Permalink Reply by Rascalx2 on
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I had my derm suggest trying Allegra for Alopecia but I didn’t want to take it because antihistamines wire me up... I believe it’s an antihistamine. Anyway, I didn’t take it because xeljanz has really helped and has grown in substantial after raising my dose to 20 mg a day, and derm gave shot in my ass of cortisone which helped get over the hump.
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