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 macdev on
-
bonjour à tous
Message en francais... Vous pourrez facilement traduire.
Certains se disent "non répondeurs au Xeljanz". A mon avis, on ne peut commencer à mettre en place un traitement quel qu'il soit uniquement si il reste des bulbes pileux...Au cours de la maladie, les bulbes deviennent plus petits et remontent à la surface du derme pour finalement avoir la possibilité de disparaître.
Sans bulbe, aucun médicament ne peut fonctionner!
Il faudrait faire des biopsies cutanées avant de traiter...
-
Permalink Reply by Nick Barlulis on
-
Don't forget Ruluxinib patients take 30 Mgs while Xeljanz patients take on average 10mg. When Xeljanz patients take higher amounts better results are generally seen. So, to say Ruluxinib is more effective because it is JAK 1/2 is (or might be) a bit premature.
-
Permalink Reply by dreamscometrue on
-
I think dosage might be dependent on the mechanism in which the drug works, so milligrams for each drug is different because of how the chain works and metabolizes in the body, unless both are of the same formulary
-
Permalink Reply by Rascalx2 on
-
So been on xeljanz for 8 months, past 2-3 months increased doae to 15-20 mgs day alternating days. I have had lot of peach fuzz come in but seems to have stalled with progression of growth and has no pigment to it. Any one been at this place and had continued with growth and color or not much more from this point?
-
-
First time chatting on this site. Had to respond to you Rascalx2, we are leading parallel Xeljanz lives. Been on Xeljanz since Sept., increased to 15, 20mg alternating days and just have fuzz, no terminal hair. Saw my doctor yesterday and she said she would put me in the non-responsive group. She is seeing best results with Alopecia newbies, I've had AU since 8yo-15yo, then AA from 15yo-28yo, then back to AU and I'm 42yo. Soooo....I emailed Dr. Ko to see if there is any hope, I've heard longer time AU peeps take 9 months. I'm giving it one year... Hope I shed some light. :-)
-
-
Has anyone not seen any results on xeljanz then switched to ruxolitnib and then started seeing results or the other way around.Im thinking this is why they have multiple medications for every disease you have to find the right fit for you unfortunately there isnt any other choices for AA.Last question out to everyone that might help us non or slow responders who added another medication along with xeljanz that helped kick start it and it worked.Trying to figure out why nothing is working for me I have 80 percent of my eyebrows and eyelashes all my nose hair and that soft fine facial hair on my face but only 30 of scalp hair? Even tried the xeljanz cream for 6 months and cortisone shots nothing works!
-
-
Very good question! What I did was look up the different biological immune modulation drugs and see the different diseases it treats, Xeljanz is mostly for inflammation in RA and arthritis. The others are the same but also treat cancers. It is a mechanism thing with lots of these drugs. What is the brand name for Ruxolitnib??
-
Permalink Reply by sadele on
-
HI Football Fan,
It's good to hear from you. I've also looked into Ruxolitnib. I think it's very hard to get and incredibly expensive if insurance doesn't cover it... $11,000 a month. There are some medications in the pipeline with some pharmaceutical companies. Concert and Aclaris are both in clinical trials for JAK inhibitors.
Have you been able to get Ruxolitnib? I had to stop taking my Xeljanz because I was pregnant and ALL my hair fell out.. it was horrible. I wound up having a miscarriage so the whole thing was hard for me. I'm going back on Xeljanz April 1 and I'll let you know how it goes. Hang in there!
-
-
So sorry to hear that Sadele. Did you get full regrowth be fore you went off xeljanz I remember you were a slow responder who finally got regrowth on 4 pills.how soon did your hair start falling out after you stopped taking it.I have not even tried to get ruxolitniib hoping Barcitinib will be cheaper if it ever gets approved.Keep us posted on your progress.
-
-
I got about 90% growth on my head, but no brows and no top lashes.. I was AU for about 6 months before I started this whole xeljanz process. And yes, I was on 20mg a day the entire time. I went off the xeljanz and withing 2-3 weeks my hair shed so bad I had to shave it off. I see Dr. King next month, April 26th, and I'll be talking to him about what he knows is on the horizon.
There are companies who are in clinical trials and I have contacted them to see if they would include me, but I haven't heard back.
Are you still on xeljanz? Have you heard of anyone taking 25-30mg?
-
-
Hey Stacy, I am an alopecia newbie. Never had or even herd of alopecia, started with a bald spot and went to AU in 8 days. Been AU for 14 months.. Im thinking i am a non responder and it feels so depressing because as im taking xeljanz im still maintaining hope, but i feel like this is it and trying to accept this feels impossible some days.
-
-
And by the way, I eat a very clean diet, have been gluten free for a year, and pretty much paleo 85% of the past year... I went back to gluten because disnt really notice huge difference, then started growing peach fuzz, but i would credit increase of dose of xeljnz. I also think "auto immune disease" is a bogus diagnosis of any of the auto immune classifications, I believe it is a pathogen somewhere in system making immune system overreact creating auto immunne symptoms...some of these point to epstein barr virus that I have looked into although I have not found evidence based proof on the EBV.. a good diet is great for overall health, but I dont believe it will grow back hair as I have seen some people make that statement.
© 2024 Created by Alopecia World.
Powered by
