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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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So guys- I had an interesting xeljanz related experience. Last week I got quite sick- the docs thought it was appendicitis- needless to say it wasn't - turned out to be an intestinal infection of some sort. It appears not to be xeljanz related but it was interesting as the doctors were all clueless about xeljanz and nervous about me being on a immune suppressant. It was difficult trying to explain the context of what xeljanz is- a targeted immune modulator. So just wondering if any of you guys have had an experience of trying To explain xeljanz to doctors. Another thing I'm kind of nervous about is that I was given Iv antibiotics - I argued against it but the doctors were insistent. I'm a bit worried this may set me back in the regrowibf- has anyone had to go on antibiotics and what impact has this had on their recovery?
Currebtly progress is slow. My head is mostly covered in fuzz now with some sections thicker then other giving an impression of spottiness. Most of the fuzz is white with some bits slowly turning brown. I'm really looking forward to a stage where I can stop wearing a wig even if it looks like I have very very short hair. I am month 7. Just wondering if those of you with good results went through a stage of fuzz before getting normal hair growth. For the new starters I can say the hardest thing I have experienced with xeljanz is the being patient. Hair takes forever to grow normally....recovery from AT/AU seems to take an eternity!
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Thanks Carlie, are you on xeljanz yet? It's a slow journey. I think Au/At really plays on your mind. Even now with obvious progress I'm constantly worried I'm not gonna recover or get to the point of not having to wear a wig to look "normal". I am grateful for the progress I have made though. I have my lashes, eyebrows and body hair back which is fantastic but the scalp is taking its sweet time. I keep hoping that in a "x" amount of time I can be wig free. My new timeframe is 6 months from now to be wig free. Hopefully that will happen. It's funny- I've always had really long hair and previously couldn't imagine having short hair. Now even the shortest of pixie styles are my ultimate goal!
I hope it works for you! And that you are able to get access to the amount you need.
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Hi Frida,
I have been AU since last June. It is devastating. I have not yet started Xeljanz - hoping to by the end of the month - but I am terrified that it won't work for me. I have always had masses of thick, curly, dark hair, long lashes, and thick eyebrows - I was known for them 0 and now I have absolutely nothing. I don't know who I am anymore. The wig I have is uncomfortable and itchy and doesn't look like me and I hate wearing it - I rarely do. The fact that you have brows and lashes fills me with wonder - that seems impossible for me! How long, and at what dose, did it take for you to get lashes and brows?
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Hi Anna,
i totally understand how you feel. It's devastating to have your identity just wiped out almost overnight. As a women, I can say this now in hindsight, going from being a relatively attractive long haired lady, to feeling like a unadorned manikin has been the hardest thing I have ever been through. The xeljanz is working for me but even with it working there is a constant sense that it may not keep working or I may not regain enough hair to be wig free (I hate wearing wigs too- it's uncomfortable, hot, scratchy and just plain annoying).
I started on 10 mgs per day and had to increase that to 20 mgs one day 25 the next. I am also doing steriod pulsing at the moment to sped things along. I plan on doing that until April or May. I have had some side effects- weight gain and acne- which are annoying but manageable. My bloods have been pretty good so that's a plus. In terms of lashes and eyebrows I highly recommend using Lumigan concurrently with xeljanz. My lashes and brows actually responded very quickly with this combo. I also recommend considering minoxidil for the scalp. It's is useless on its own but I do think it helps when used with xeljanz. Since minoxidil can be gotten pretty cheaply (the generic) to me it makes sense to offset the more expensive meds with the cheaper med to enhance results.
Ive found this forum very helpful. Like you I waited awhile to join it as I almost couldn't admit to myself that this was my reality. It's been a godsend to be able to get information from people who have lived this as well. I totally understand how you feel and, was terrified I wouldn't respond but even now I can say that eyelashes and eyebrows are back so keep your chin up!
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Yeah I think they are the same but lumigan is like a cheaper brand. There is also a generic called careprost which tends to run a little cheaper too. They work a bit like minoxidil but aren't dangerous for your eyes (i
think they use them actually in the eye for people with glaucoma so reasonably safe.
i struggle to work how to friend someone on here too. Never really been on a forum before but I don't know anyone in my immediate life with alopecia so this has been a godsend.
Its so so tough - I think the most important way to deal with it is to be pragmatic and think that this is short term. I know it's extremely hard to do that though(I'm still struggling with that). I kind of just researched researched researched and researched so I could learn as much as I could about treatments and tried to be rational (easier said then done) and figure out pathways.
i also tried to throw myself into my kitchen renovation too so that in my down time I didn't get to introspective and depressed about it all (this was only a little successful but at least my kitchen is almost done LOL).
One of the hardest things to deal with is people telling you it's just hair (always people with their hair!) and that you should get over it.... I feel like saying if it was that easy to "get over it" then why don't you go shave your head and pluck out your lashes and eyebrows and then come back and tell me you feel 100% fine!!!
anyhow stay strong and just hold on to the fact that there are treatments out there that have reasonable success rates. I was reading somewhere that even pulsing steroids is often success on even bad cases, and other immune suppressants have had some success too.
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I'm currently on 11mg xr. I still have my beard and my eyebrows but I'm very much bald on top. My beard is falling out however at an alarming rate.
I see that everyone takes different doses to get xeljanz to work, which makes me worried.
Will xeljanz at the standard dose help with at least retaining the hair u have already, and how do you know if the standard dose is going to work for you?
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My doctor waited until I was on 10 mg for 6 month before increasing my dosage to 20 mg. I had no response on 10 mg, but saw the first hairs at about 2 months on 20 mg. I think that my doctor had to try with 10 for at least 6 months in order for my insurance to pay for the increase.
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