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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 AnakinWildstar69 on
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I agree. Topical Xeljanz does not get to the source (topically) as systemically(orally). This is from my research, anyway. Also...to everyone who's reading this: Check out CRISPR-Cas9 gene editing method(s). I'm beginning to think this is the NEW/ONLY/BEST method of permanently stopping this dis-order of AA/AT/AU. I'm learning that this/these methods can get to the 'root' of the problem, and turn off the gene(s) responsible FOR autoimmune alopecia. Remember this.
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Permalink Reply by Newjack on
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Gene editing? That's awesome but so unlikely of being approved anytime soon .We could cure so many things
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I haven’t managed to find a topical - but the issue would be, if she is heading to AU and the shedding is diffuse then it would be difficult to apply to all the patches, plus it would be hard, if not impossible to save lashes and brows. Personally I think that it may work on patches but if you are losing diffusely ( I got two patches then a diffuse lose of the the rest) then it would be hard to keep up with, just like minoxidil and topical steriods don’t seem to be that effective on bad cases.
have a close look (if she lets you and is not too upset by you messing with her hair - it’s very sensitive) to see if there are any tiny white vellus hairs. Regrowth seems to begin in tiny white hairs. It seems to folllw the hair cycle so it could take 3 months without treatment to see if she is going to go into remission on her own. Personally, and I have two kids so I get the complexity of this, I would start her on the oral betamethasone pulse now, while you work through getting her the toficitinib. As both take time to kick in, and, I personally believe, that if AU is happening it is often hard to catch, as the dead hair is sitting in the follicle just waiting to drop (does that make sense?), then you can move her towards regrowth quicker. Also treating it aggressively, at least for many of us, gives us that sense of control, which can ease the anxiety a bit.
Do not be disheartened if the meds take along time to work- slow response is common but not an indication of being a non responder. As doctors (and I feel so silly telling you guys medical stuff as I’m sure you know heaps more then I do re biology and autoimmunity) you’ll probably want to run blood tests very similar to those run for methotrexate and/or cyclosporine, most of us, children included, seem to cope very well on this med, some have some issues and it’s important to monitor how your body goes with it.
once growth happens you can try and wean her down. Some people can wean off, but most of us AU have to stay on, at least on a very minimal dose long term...
If you search on this forum I’ve posted some articles re steriod pulsing and just one the other day which was a really quick and easy read on one of the larger studies on xeljanz and alopecia with photos and timeframes.
There is a lovely father on here called mashloum who got his young son (I think under ten???) on the meds, they worked and his son is going very well on the meds and enjoying a full head of hair for the first time in a very long time. Whenever I read his posts my eyes well up with joy. For a child to beat this horrid condition - it feels like winning the lottery!
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I think I may have asked this before, but has anyone had surgery while on xeljanz ans been fine?
I've been recovering from a minor surgery since October and am wondering if it's can cause the immune system to go haywire. I had an abscess that needed to be left opened to heal (sorry for TMI) but I am prone to them.even pre alopecia and they run in my family.
I believe someone said they had no issue with xeljanz and recovery, but would like to ask again.
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Just updating everyone . I've been on 20mg for a little under 3 weeks .Spots are filling in but I'm still shedding up top a lot. Hopefully it reverses soon... I actually want to shave my head again so I can see process easier .
I definitely think my surgery had something to do with it. Hopefully I'm fully heslhe by March and I'm back to where I was in October
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Hey Newjack,
I asked my friend who's a bio chemist. He said that with AA hair follicles lose their immune privilege (IP), basically allowing them to be "tagged" by a protein that identifies it as foreign so the immune system attacks the follicle until the hair falls out.
What Xeljanz does in basic terms is blocks that protein from attaching and tagging a follicle to be attacked. What it doesn't do is untag a follicle thats already marked so it cant stop a hair from falling out if the process had already started. But it will prevent new ones from getting tagged.
All this to say what's been done is done and we cant stop a shed thats already started, but it does minimize the extent, and if you had good success (yours was fantastic!) it's all going to grow back.
I've been on Xeljanz starting my 3rd month now and still shedding like mad. Eyebrows are almost gone, scalp isn't far behind. It's really tough to deal with right now not knowing if it's going to work. But seeing how well it worked for you keeps my faith.
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Thanks TC, this is kindof what I’ve been trying to explain, from only a very basic knowledge of biology - it’s hard to catch AT/AU that is in the process of happening. The hair that is shedding usually died previously and was just sitting in a resting phase. So it’s gonna drop out. But xeljanz gets that follicle growing again. It’s not a quick fix at all but if you respond (High number if dose and adjunct therapies optimal) you will get it back.
in your case New Jack I think that the shed won’t be too extensive. Your dose that you were on probably did give most of your hair follicles protection, just a few lost the privilege due to your body ramping up to heal after surgery. I think in a few weeks it will cease and regrow in.
I was reading about surgery and steriods, just out of interest re your case. I noticed in some facial surgeries (like nose jobs, jaw realignments, major teeth surgery, ear operations) they actually give a significant dose prior to surgery to limit the inflammation and swelling post surgery. If you need to go back for any surgery to your jaw or teeth perhaps ask the doctor if this might give you extra protection from a post op flare. It is controversal as steriod slows healing but in our case putting a dampener on our overactive response might be healthier in the long run as long as you are watched closely.
thinking of you- but I do think that xeljanz protected most of the hair and it will be a very minor shed x
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Hi Frida :)
Hope you're feeling better and the shed is starting to stabilize.
This has definitely been a learning process for me. The other thing that he mentioned was that hair is a somewhat complicated process. Sometimes hair that was tagged months ago that's weak is being shed or pushed out to be replaced by a new stronger hair. And since we're medically inducing hair regrowth many of the hairs came in at the same time, creating a large amount of hair on the same cycle. So when it sheds it seems like we're losing a huge amount 10,20,30 40%, compared to a normal person who may shed 1-2%. It can take years for this cycle to normalize.
It's hard to know what works and what makes things worse because there's a time delay of 2-6 months between what treatment we've done and what we see in the mirror. It's worse than watching paint dry!
I keep thinking of this Seinfeld episode "Serenity now!" ..."Insanity later"
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Good information!. I like the idea of a pulse dose of steroids before a surgery! I probably wouldn't stop taking my xeljanz, you would have to pry it from my fingers. I would amp up on colloidal silver and stop all sugar, caffeine and drink tons of water prior to s surgery. But not stop Xeljanz.
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Thanks TC, I think it is kindof slowing, it’s weird as it’s not outside of the shed I used to have before pre-alopecia and didn’t think twice about. But it’s definitely more then what was coming out a month ago (which was absolutely NO shedding. I do think it’ll be fine. My hair came back in thicker the before the alopecia so maybe it could be my body normalising. Either way upping dose and steriod pulse just to be on the safe side. The funny thing with hair is that it can come back totally different- mine was straight, a very rare kink if I went to bed with it wet and slept on it weird- now I have a head of curls, not just waves but big barrel curls. Either way I am happy- at the beginning of this process I was like it can come back green and I’d still be happy!
You are handling this really well - in a way I think at the onset, when you are losing it’s such a scary process but it maybe destined to happen BUT just remember it will almost certainly come back and try to let that give you a sense of peace.
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