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 lu391 on
-
I've been buying xeljanz in turkey for the past 2 years, the last time I spent 2000 lira a box, did anyone go to buy xeljanz in turkey recently? I wanted to know how much spent to make a comparison.
-
-
-
It looks like barcitinib was approved by the fda this month.Barcitinib is a jak1and2 xeljanz is a jak1and 3.The article I read said there were several other jak drugs going to be approved in the next few years.This is good news for us non responders it gives us another option to try.we might need a different pathway.Didnt give a price but I’m sure it’s outrageously expensive.Anyone out there on the Alopecia clinical trials going on.
-
-
-
Football fan how long and at what dose were you on Xeljanz before it was determined you were a non-responder? I ask because I think I may be one too.... thanks
-
-
-
Carlie, I have someone in Turkey who buys for me and send it to me each time with passengers ( each time I have to find people who comes to Canada to bring for me 1 or 2 box)
if you mention you have 12 box, custom will make you problem I think.
Shad
-
-
-
Hi Anna I started at 2 pills a day went up to 3 pills and even tried 4 pills for 5 months.Also tried it with plaquenil with Allegra and also trying spironolactone now with no results.It has been a 3 year journey opps almost forgot I also tried the cream.Thought I would be a good responder because I am not AU just severe Alopecia.When I look in a makeup mirror I have that fine peach fuzz hair on my face,nose hair,enough eyebrows to look natural with a little product and most of my lashes.I do most definitely have to wear a wig and don’t have to shave my legs.I am putting all my hope in the new medications coming out.Have not tried it with steroids I know my Doctors won’t prescribe them and one Doctor said he prescribed it to two patients and one of them got severe bone problems.Hoping a Jak 1 and 2 will do the job.Got this crappy disease in middle age never even had a spot as a child or young adult and had plenty of stress back then.Only thing that changed I developed a thyroid problem and this happened about 3 years later.I believe I’m in the minority because so many people seem to be having great results with xeljanz.Good Luck
-
-
-
Hi football fan,
Really sorry to hear you haven’t responded to xeljanz. I really wish there was an affordable and sustainable solution for all of us with this condition. The news re barcitinib being approved is good news. I, being a nosey Parker, googled around looking for the price and it seems to be around 1600 euros per month for 4 mg dose (which seems to be a standard dose for active stage RA and 2 mgs seems to be standard dose to keep it in remission.) While this is expensive and unaffordable it wasn’t as bad as I had expected, given Ruxo is crazy expensive. Potentially, if insurance begin to recognise it as a treatment, it maybe doable for some alopecians who aren’t responding to xeljanz. I really do think the Jak pathway is the issue. That, and dose- crazy high doses may work but are otherwise unsustainable, either financially or physically for us, so the amount we can take is limited - either because of cost or because our bodies don’t cope. That said -there are people who take pretty high doses and their bodies cope, whereas some can’t cope with standard dose.
Another thing I wondered, mainly because I keep reading about RA - it seems, for RA at least, some doctors will combine methotrexate and Jak inhibitors. I wonder if any alopecian has had success with a combo? I tried methotrexate before xeljanz and it didn’t grow my hair back but I did feel quite healthy on it ( there are plenty of horror stories out there so maybe I’m a minority) - but I never combined them. It seems that if it works in combo for RA then maybe a combo would work for Alopecia too? I know many people wouldn’t want to do it, as the risks increase with the more meds you add, but for people whose quality of life is really suffering from the Alopecia ( ie serious mental health or psychosocial issues) then perhaps it may be an option?
Anyhow I do hope that for the people out there who don’t respond to, or bodies reject xeljanz that the Jak 1 and 2 inhibitors will work and be attainable soon.
-
-
-
Hey guys, I think I asked this before.
But my hair/scalp hurts still even with the great regrowth I'm having. Is this normal? Does anyone else experience this while having regrowth? I just buzzed my head and it was extremely painful.
-
-
Thanks for the info Frida.Will keep everyone posted if ever I get to try barcitinib probably won’t be for a while because it is so new and hard to get.If any non responders try it please let us know if it works.
-
-
Well, I am in the minority with you Football fan, and I know how much it SUCKS. I do think one day there will be an alternative that works for the likes of us, but it's likely several years off. In the meantime, I live a half life as someone with AU (also developed in middle age - at age 48).
-
-
Oh Anna, I hate that you have to go through this. The half life comment breaks my heart cause I know it to be true in my case too. I felt like I was just existing. I must say I’m still not 100% recovered- hair wise I am but emotionally the scars are there and the fear... but I know I am lucky and so grateful but I can’t help but feel like I am not better until all these wonderful people on here find a treatment that works.
Is there anybofy out there following that have experience with a Jak 1/2 inhibitor that can share some info - ie costs, trials, insurance or sources? We seem to be pretty low on tithe totem pole where much of the medical community is concerned so I reallly feel that we need to drive this from our end. This horrid condition is just so hard on some of us, I just want to find a way to give some of these people, for whom xeljanz is not the answer- back the life that they had before this hit.
-
-
I totally understand how you feel Anna.Wearing a wig in Southern California sucks,you can’t go in the pool,on a boat your afraid it’s going to blow off not to mention all those 100plus degree days and sweat is dripping down your neck.went to Disneyland and you have to hold your hands on your head on many rides and hope it doesn’t fall off.I have some friends that know I’m wearing a wig and some that don’t.I use to like more highlights in my hair in the summer and darker in the winter but your stuck with with the same color and length every single day.When I got my first prescription of XELJANZ I was so excited I even made a whole chart to track my monthly progress.I do hope there will be something out there for us soon but am afraid of being disappointed again.I would love to be able to ask dr King if patients that did not respond to xeljanz,respond to Ruxolitinib.
© 2024 Created by Alopecia World.
Powered by
