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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 Frida Rupert on
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Hi Kevin,
yes i stopped shedding- it was weird- lasted a month- no really noticeable patches but I had been losing absolutely no hair and then all of a sudden was noticing hairs in the brush. It’s kindof come in now as a second shelf of hair, and I never noticed any thinning really at all. I have a feeling our hair cycles are going to be a bit off for awhile so shedding here and there might even help normalise the hair cycle in the long run- but stressful for us as we all have had trauma related to hairloss . Re the baricitinib- I think Jak 1 and 2 inhibitors are considered to be slightly more effective than Jak 1 and 3 but jakavi is probably a far bit stronger than baricitinib. Baricitinib has a very short half life (even less than tofa) so it may lose effectiveness quicker and therefore if someone moves from the longer lasting jakavi (ruxo) onto baricitinib they may Need to dose a bit differently and more regularly. I’ve often thought perhaps a lower dose (say 10 mgs) of tofacitinib and 2 mgs of baricitinib maybe more effective than a higher dose of one or the other- but alas no medical trials exist so the risk of unknown interaction is a bit of a hinderance. To me that would enable a little bit of Jak 2 (which seems to be relevant to alopecia) to be inhibited and may allow the Tofacitinib to be more effective and cover for the short half life of baricitinib. Also baricitinib is not metabolised by the same enzymes as Tofacitinib and therefore they wouldn’t strengthen or weaken each other.
glad the solumedrol worked. I will have to read up more on it. I know not having full regrowth must be frustrating. I’m really hopeful that soon something more effective will come out but the Tofacitinib buys us time - and the response you have gotten, I think, would be protective of your hair follicles for when the more effective treatment comes out. So glad that your stress is a bit less- this condition comes with so much anxiety!
frida :)
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Hi,
Anyone on this site got a UK dermatologist/dr looking after them whilst on xeljanz ?
I Need a UK dr/ dermatologist who will be willing to give me an appointment so I can ask if I can try a co-therapy while am on tofacitinib.
Thank you to anyone who can let me know of one! Even if I can book a private appointment to avoid long waits..
Thank you
kind regards
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Hi Singh
did you know about the dr -
caiterina Ryan in Dublin who is supportive. ? Also what cotherspy are you trying ?
the is !
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Hi guys
New to this site but very impressed with the thread - took me a while to read. I'm after some stats :) - how long does one normally expect to wait to see some results? I had developed AU very rapidly last year, took me a while and a lot of $$$$ spent on useless treatments to finally find a doctor who knew about tofacitinib and was willing to prescribe. However, taking it since Jan this year and NOTHING! I started with 10 mg but later switched to 15 mg and now 20 mg of the generic, I am also receiving shots into my eyebrows and after the shots some hairs pop out, but not for long.. I also have some tiny patches of hair on my head now, but o think it's also due to injections.. know it's a long waiting game but since it's been around 6 months I feel a little discouraged...
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Hi Kate,
Welcome to the forum and your new family.
If your AU was very rapid and recent, it sounds like your immune system may still be in aggressive mode. It's promising that you're getting some regrowth from injections. How long have you been on 20mg? It can take up to a year to see results and really varies individually. Being patient sometimes feels more difficult than regrowing hair.
You can ask your doc to consider adding 5mg oral minoxidil daily in conjunction with the 20mg Tofacitinib for 3-6 months and see if things improve.
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Hi
Thanks for your reply and sorry for taking so long to get back. I have only been on 20 mg for about a month, bit continue to lose eyelashes slowly. To be honest, hair is smth you can get used to but not having lashes and eyebrows sucks! My doctor is against minoxidil as he thinks it leads to heart issues bit I will talk to him about it.
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Hi Kate, welcome to the thread, though I’m sorry alopecia lead you here. Stats around response are kindof hard to find, I took heart at the beginning of my journey in a study which showed a guy who didn’t respond for 8 months (like not even vellus hairs), at 18 months had 90% back. I need to dig up that paper again. I do think studies are conservative with response times. When I started in 2017 there were studies that only went for 3 months and then claimed response rate was pretty low.... many of us take much longer to see a result. Luckily more and more studies are of a longer timeframe and allow for co-therapies, however the strict guidelines around many medical studies can limit results and not give a great picture of results of someone who is throwing everything at the alopecia. My personal experience - 4 months I had very little to show, I upped my dose to 20 mgs and added a steroid pulse of betamethasone 5 mgs 2 days a week (must be two days together) and by 5 months success- vellus hair! Once growth was established I weaned off the betamethasone (pulsed for around 3 months) and luckily kept it all, though am still usually on 20 mgs (dropping at the moment for a minor surgery). I have 100% back. Besides the betamethasone I found some co therapies may have helped (but I can’t confirm as I used them all at once)- minoxidil (topical), lattise on lashes and brows, biotin supplement, vitamin d and iron (as determined by blood tests - d and iron I can be a bit low). The other thing and this is controversial, but berberine is a natural Jak 2 inhibitor and current research suggest Jak 2 inhibitors are slightly more effective than Jak 3 inhibitors (tofa mainly targets 1 and 3, Ruxo and baricitinib focus more on 1 and 2), so while I don’t think berberine is strong enough to do much on its own it may help a little bit as a cotherapy. I was taking this until recently as it’s a blood thinner and have to be off these for my surgery, but will continue once recovered. Unfortunately there are a few who don’t respond but if you are seeing some growth with shots I think it’s a matter of time and co therapies to see more growth.
Frida
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hi frida you're right i also read for non-responders or incompetent regrowth that he tested the jakavi with the lowest dose on the 8 patient 5 had a complete regrowth,
i wonder if baracitinib would react like that it's also an inhibitor jak 1.2 you really know the difference between the two?
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I can tried xeljanz and baricitinib 10 mg and 2mg of baricitinib as you say, but you think it can have a bad action on health? both simultaneously? I see my dermatologist Tuesday I ask him the question I thank you.
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Hi Kevin, make sure you check with your dermatologist first. My theory is very much only a theory. It just seems baricitinib hasn’t had the alopecia studies of jakavi or Tofacitinib but I know trials are happening on it. The problem is these trials can literally take forever to get info out.
I have a easy to read article that compares the two- unfortunately it’s in English so not so easy to translate and the focus is RA but there’s a great simple chart that lists the specific interluekins and Stats that are targeted and differ between the two. I think the differences in what the inhibit are relevant in why Jak 2 suppression has slightly higher success than Jak 3.
i do note however I am not a chemist or pharmacist so I read a lot and try my best to understand the science but sometimes the science does overwhelm me as I’m more of a humanities minded person- but I’ve learned with alopecia - you got to do the best you can to figure things out as there isn’t a great push behind research for us.
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Permalink Reply by Lindzzej on
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Hey Frida, as usual you are such a wealth of information, thank you. I have a question on the berberine, where did you order or buy from and did you talk about it with a professional first or just go for it? I’m thinking I’m going to give this supplement a try, so I was jw as I’ve never heard of this. Thanks!
Lindsay
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