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 Bumblebeee on
-
I've been lurking on this discussion thread but now feel compelled to put in my 2 cents on my experience with tofacitinib. I've had AA 3 times since my early 20s and suddenly was hit with AU in 2013, about 6 months after I had my first kid. I grew about 95% of it back after taking prednisone for about 6 weeks but even during that time, I would get constant prickling and itching sensations and soon after, I'd feel a smooth bald patch. Sometimes this happens literally a second after the sensations, and sometimes hours or days.
Anyway, I've now lost 90% of my scalp hair and starting to lose the brows and body hair again with the same pricking and itching. I've started Xeljanz 2 weeks ago and I feel like it's made my immune system attack even more aggressively. I'm now losing hair at a faster rate and the prickly, itchy sensations are driving me crazy. The doctor just dismisses me saying that I shouldn't feel anything with AA but I know that I do and I know that it's pointless to argue. So that's my experience so far. I'm not sure if I should continue and hope that eventually it will calm my immune system the hell down or if I should give up or if I should try a higher dose. I know it's just been 2 weeks but I thought the prickling and itching would have lessened by now. I hate this disease with a passion!
-
-
Hey Bumblebeee
I have definitely felt an itchiness (actually like slight burning), and to me feels like an allergic reaction -- the same way my nose feels when I breathe in pollen. I definitely have some allergies, and often wondered if alopecia is some kind of skin allergy (on top of an auto-immune problem). I know when I'm getting a spot too, though, just by that feeling.
Interesting (not a good way), but that you feel that the alopecia is fighting against the Xeljanz. I also had aa episodes like 6 mos. after having my kids. I would definitely keep going though -- you may have been in a cycle of falling out and 2 weeks isn't long enough to stop -- but maybe a month will be. Just wondering, can you take Claritin with the Xeljanz? Maybe it would stop the sensations if there is any allergy component there for you.
-
-
Hi doodler,
It's interesting you mentioned allergies because since the alopecia has started becoming more aggressive, I've also gotten a horrible eczema flare. About a week after I started the Xeljanz, some of the eczema patches have completely cleared up, while others are still the same. Who knows if it's because of the Xeljanz though but it was interesting how quickly the eczema disappeared.
Thanks for the Claritin suggestion! I took one and am hoping for the best. It's bad enough losing your hair but to be constantly reminded with the unending prickling and itching is enough to drive me insane
-
-
Well - I sadly took my last Xeljanz yesterday for the 3 month Stanford trial. I went back and forth and back and forth deciding if I should stay on because I am having success. Since starting, I have maybe about 1/4 of my eyebrows back, 1/2 my eyelashes back, and maybe 50% regrowth on my head. I am going to keep a very close watch and start back up again if need be. Wish me luck!
I am sure this has nothing to do with it - but through my own guessing game with this crazy condition, I decided low vitamin D and POSSIBLY a gluten intolerance may have contributed. So through this entire trial - I have been Gluten Free and and high doses of vitamin D. I was gluten free about 6 months before I started the trial - that did not help at all. But maybe it has contributed to my success on Xeljanz - I don't know.
Anyway - stay tuned!
-
-
Good Morning Everyone...just a quick update. My daughter has a confirmed appointment with Dr. King mid June. Once she starts Xeljanz I'll be sure to let everyone know her progress. Obviously there is a lot of anxiety with trying a new medication like this...especially the variety of side effects.
The cruel part about Alopecia is it's variance in impact and how it behaves in each person. There is no one logical approach...it comes down to a process of elimination. It tests your faith, your belief and your inner strength. I hope one day the FDA will approve new medications so this will be a distance memory for future generations. For now as Parent, I feel I owe my daughter at least the opportunity to try this. Thank you ALL for sharing your journeys!
-
-
this is great news! I was first diagnosed when I was 15, and it was hard to have hair loss and be a young woman in school.
I met with a rheumatologist this morning about xeljanz (I did get the prescription) and we reviewed the side effects and honestly, they seem to be fewer than some of the other treatments that I have tried for Alopecia. I was on Prednisone/cyclosporine for a couple of years, and I think I feel much more comfortable taking Xeljanz!
I do hope that you find positive results with Dr. King.
You are a GOOD DAD.
-
Permalink Reply by AlopeciaDestroyedMyLife on
-
This months photo here you go !
-
-
Wow that is fantastic!!!
You must be pleased. How long has it been now?
-
-
Thank's LSWA,
It's been almost 11 months since I started taking Xeljanz.
-
-
Hi- anyone who's been on xeljanz applied for the copay card in more than one calendar year?
© 2024 Created by Alopecia World.
Powered by
