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 Arsenalauba on
-
Just like NewJack my hair around my ears are thinning out and I don’t know why?? Losing like 40 hairs a day and are on 20mg a day and been for 4 months.
-
-
I am taking probiotics now (pro-50) it helps my digestive track a lot. Hopefully this turns things around for me. I've noticed that the sides, back of my head are thinning but not the back of my head and its been getting progressively worse (very slow though)
I am on an antibiotic (minocycline) and I am going to ween off it the next two weeks. I dont trust antibiotics. I think its the cause for all of my issues.
-
-
Hi new jack I totally agree with you about the antibiotics and I think adding probiotics is very wise since there’s a strong link between gut health and autoimmune in general . I remember you are on 20 mg a day and I think you mentioned you were going to switch to beacon generic . If you switched and you are taking 4 tablets of 5 mg a day you may have decreased your dose without realising and hence the shedding . Have you switched ?
-
-
New Jack- I don’t trust antibiotics either and believe they were partially responsible for triggering my alopecia. When I look back on my health historically hair sheds (which I didn’t identify as alopecia at the time) occurred 2/3 months after infection and antibiotic use. I think my trigger to AU was a combo of severe ear infection (ruptured ear drum), a bout of glandular fever and antibiotics used to treat the ear infection. I can’t conclusively say which was the main offender as they all happened at the same time, but I believe the only thing that stopped me going into severe alopecia the other times (when I noticed shedding but not spots) was that I didn’t have active glandular fever.
Have you been tested for EBV (glandular fever is a EBV) More and more research is suggesting EBV is playing a role in autoimmune disease. I would stop the antibiotics and give yourself three months to see if the hair shed stops and reverses. I think you’ll see a stabilisation once off the antibiotics. My view on antibiotics now is that I will use them if my life is threatened but otherwise I stay well clear.
-
-
My shedding actually slowed down on antibiotics, but I have a heavy dose of probiotics as well. I'm going to ween off very soon. I haven't taken antibiotics in over 4 years. I wonder if I had an infection unknown to me and caused me to go haywire
-
Permalink Reply by Rascalx2 on
-
I had a flu shot few weeks ago and have had major shedding on xeljanz, it does not seem to be getting worse, but some major spots in back about 3 inches wide, i have about 5 spots. This is how it started when i went AU, but it never stopped coming out. Im pretty confident that it is not shedding more, but i ll have a eyebrow hair fall out here and there and cant help to get anxiety remembering the past.
-
-
I was on Xeljanz 5mg per day for 20 weeks. Did have some hair regrowth but quit because of side effects. The first thing I noticed was achyness. My feet and ankles were sore walking on my hardwood floor so I was always wearing cushy slippers around the house.
The 2nd think I noticed at about week 15 was gum inflammation. My dentist saw excessive bleeding at my regular checkup and found a bacterial infection, which is one of the side effects of Xeljanz.
When I went for my annual physical at week 20, my blood tested for high liver enzyme. I went low acidic vegetarian about 6 months before in an attempt to control scalp inflammation, so doc didnt think it was a fatty liver from rich foods. He said it was possible liver cancer or sepsis. This was yet another side effect of xeljanz.
I looked deep into the mirror. Spotty, all white, sickly looking hairs were about a half inch long on top of my head. The progress I was seeing at 20 weeks didnt feel worth the fear I had about my aches, gums and liver. I definitely wasn't going to up the prescription to 10mg. So I decided to discontinue.
Two months ago, about a year off Xeljanz, I joined the Baricitinib study. It's low dose, 2mg, and goes for 2 years. I'm 8 weeks into it and MIGHT just be starting to see baby facial hairs.
I wish you much luck on Xeljanz! Keep us all updated.
-
-
Just a question maybe someone knows some answers.It has been 5 years since doctor king stumbled across what will help grow hair for people with AA.And it seems like there are several trials that have been going on with successful results.With drugs that are already approved for other diseases or slightly modified drugs.What is the hold up for approving them for AA when we do not have one drug out there for our condition.There won’t be a cure in my lifetime and it’s not looking like anything is even close to getting approved.
© 2024 Created by Alopecia World.
Powered by
