Alopecia World
www.alopeciaworld.com
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.
-----------------------------
AW: Other discussions on Xeljanz / Tofacitinib
https://alopeciaworld.com/main/search/search?q=Tofacitinib
Replies to This Discussion
-
Permalink Reply by jackson mcdonald on
-
can’t seem to find any information on things i should or should not be doing while on the medicine.
-
-
tons of people are on biologics you can do se research on other forums.
I took 2 times xeljanz...
first time no alcool and no smoking.no results except my nails.
second time I drink very occasionally but I smoke (all kind of smoke yeah yeah). very good results
this medecins is powerful... don't eat grapefruit. try not to get sick...
-
-
That's good to hear. I live in CA and don't want to give up my greens :D
-
-
Hi return to life,
I'm kindof excited! I think I'm reaponding, the last few days I've noticed widespread very short growth on about 2/3 of my scalp. Not much to many but to me amazing! It's a fine stubble but not just random white hairs anymore. The coverage is a lot better and it's definitely more consistent then any regrowth to date! Maybe X is working for me!!!! Thought I'd let you know as you've given me some great advice. I'm still on 15, we'll see how growth goes the next few weeks before I go up to 20 but geeze this makes me feel a bit better. I think I am a responder for real now (LOL I was telling myself I was a responder before but I was kindof doubting myself!)
Frida
-
-
awesome. very happy for you.
also rememeber 2 things:
there isn't only super responder and non responder. a lot of people respond to a certain degree.
you want to take the lowest dosage that will give you great results. stopping because of adverse events and losing the new hairs is a major step back.
last Friday I went out... it was the first time after 11 years that I felt good in public. this disease took my life away from me...
-
-
Congrats return life! Must be a great feeling going out in public and feeling good. Happy for you mate :)
-
-
Yeah I, trying to be excited but cautious. As i said to my sister- having some signs of improvement make it easier to be patient and kind of relieved Im getting something at 15 mg so I can stay on this dose for a bit.
Great to hear about you going out and feeling comfortable. That's the best feeling ever, and now we've experienced Alopecia totalis i think maybe we can cherish that feeling with a bit more clarity then most. Looking forward cautiously to being able one day to ditch my wig, and being able to go out and feel the breeze on my head- thats the main thing I miss.... I kind of cringe these days at work when I hear my colleagues talk about bad hair days...really they have no idea- I wear a pretty good wig so most of them don't know the extent of the hairloss but geeze i'd be happy with most peoples worst hair day...
Anyhow super happy to hear of your success - it provides us with so much hope , and really during the dark days of this condition a little bit of hope is what makes us roll out of bed and put one foot in front of the other.
:)
-
-
Hi Frida
Good to know about your progress.
I have sent you a message. Can you please check and help.
Thank you
-
-
have any of you guys who are taking X experienced an increase in acne. I never used to breakout as bad as I do now and I think the cause may be the medicine. Any thoughts on how to get rid of it or how to prevent any breakouts?
-
-
my main problem with X is acne. the more x I took the more it gave me. I reduced my dosage because of acne.
in some cases u can have an eruption and they hurt... I tried a few cream but the only thing that worked I think is TactuPump Forte. it's costly, takes a good 4 weeks to see first sign and u can have severe rash.i stopped using it cause it burns but I don't have acne anymore... whenever I see acne again I a little bit of tactupump and its good
I also cleaned the diet a lot and have veggie juice every day... don't know if it made a difference
-
-
Yep- never had acne before, even in the depth of adolescent hell...so its kind of new for me too. Got a nasty patch on my chin. One benefit of being a lady I can clump on the concealer (boys can too!). I have some retin-a cream from my doc but it only helps marginally. I think as my body adjusts its kind of easing a bit (maybe Im being optimistic?) . Still I'd rather deal with acne and have my hair then have clear bald skin... but i understand for some its a big issue and they'd prefer the clear skin.
I think i get headaches too from X so i think its not a free ride so to speak (Ha- its not a free ride literally as my husband will rave on about...) but no massive change in weight, bloods are good etc). Hopefully if you get some prescription cream it will help a bit. I think I remember reading on this thread that some people even take a oral medication for it but can't seem to find the posts at the mo. Fingers crossed you find a solution.
© 2024 Created by Alopecia World.
Powered by
