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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 Newjack on
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Here is a picture same side and pretty much the same hairloss on my shins. I did a pull test and nothing came out and I tugged hard!
Seems as if I had Areta of the body for awhile before my scalp had Areta and my beard. But I never had it on my legs just my back and shoulders. Never turned to universalis. Just Areta on the body.
But my legs are weird to me because they aren't coming out and it came out of no where and now I'm ultra sensitive to finding new spots. We're all pros at finding and feeling new spots. This has no feeling of burning or itchy.
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where do u see the hairloss? inthink its in ur head...
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hi all. just wondering and thinking out loud hoping to get your opinion. there should be v natural jak inhibitors there...ive done some search found out berbine, black seed oil, litsea glutinosa or something like that and brevil A... what do you think?
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I've tried berberine supplements- I've only taken them with xeljanz so I'm not sure if they had any impact. I think they probably help a bit with inflammation but the supplements may not be enough to work on there own, though that said - I thinks its based on the individual case. Don't think they would be dangerous to use anyhow so that's a plus.
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I just bought some latisse but I am getting very anxious for my eyebrows. When did you guys start noticing eyebrow growth? Mine are falling out still quite quickly without any growth.
First picture is from today. Second picture is from December
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I think it's different for everyone. My lashes and brows responded way earlier and at lower doses then my scalp whereas others seem to respond quicker on their head. Latisse (or lumigan or careprost - which are the generics) definitely helped a lot. In fact my lashes are now a bit longer then pre alopecia. If you are worried i would try latisse. Though to me your brows look amazingly thick still. I know it's an individual thing. When your used to have mega eyebrows and then you lose a bit it has an impact.
The biggest problem with this condition is anxiety. Even now my head is covered I'm constantly worried about it falling out again. When my hub says "wow aren't you glad your hair is back" or "it looks so thick " I'm like "well let's hope it sticks around!" So I understand the anxiety.
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They're still think, yes I know. But they used to be like bricks on my face. The difference to me from those 2 pictures are big. But my girlfriend hardly notices anything and you don't either. Maybe it is in my head and for sure the anxiety is super real. Thanks Frida. You've been beyond amazing.
I'm taking xeljanz but I still have to be perscribed it! I only have one free month. K should be able to get covered by xelsource sometime in March. Unless something terrible happens. Another anixeity inducing thought.
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Yeah my god that would be anxiety inducing! Anything to disrupt your medication access is just so not what you need mentally. Just really hope xelsource comes through for you in the next month. I don't necessarily think it's in your head- I remember at the beginning of my alopecia my family kept saying oh no it's not spreading until it was like totally obvious and I was bald and I was like "see I told you" (one of those times in life I would've loved to be proven wrong). One thing though is that you do have lots and lots of hair so hopefully the shed will be contained and it'll still be unnoticeable to most... I guess it's catch twenty two though, as you are so used to "mega hair" even having quite thick but slightly thinner eyebrows still makes you feel a bit strange. Sounds like your lady doesn't mind or notice so that's wonderful too.
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Yeah, it's great that she's been by my side through this. Don't think I'd be able to do it without her.
I am seeing my dermatologist tomorrow so I'll probably get the routine shots in the eyebrow and evaluate what's the next steps for me to promote growth since xeljanz is doing wonders on the scalp. I am pretty confident I'll have 100% growth by May
My girlfriend looked at my AA on my beard and saw baby stubble. So I just have to be patient.
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