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 Newjack on
-
Thank you. I'm starting to grow impatient with my beard it's not growing in. I can see oeach fuzz around my eyebrow though which is a good sign for that. My beard has white hair but it's very sparse and hasn't hit it's stride like my head hair.
I will be leaving for Boston in 3 weeks with some very good friends of mine and was hoping I'd have at least a full head of hair and my beard could hold up.
-
-
Sharing an update- I have now gotten 2 rounds of cortisone injections on my thinning spots. I think this has pretty much stopped the Hair loss. I have also learned that my serum ferritin (iron) is low again, like it was when I first lost my hair. So I have just re-started the iron supplements and started incorporating more red meat into my diet. The shedding has definitely slowed since the injections/iron supplements and the burning sensation has pretty much stopped. I can see signs of refrowth in some but not all areas. I am pretty sure this set back was caused by an allergic reaction to hair spray and or dry shampoo- both products i haven’t used on my scalp in the 2 years I’ve had Alopecia so I think my body reacted negatively. I switched to all “free and clear” hair products that are free of common allergens. Trying to stay hopeful.
- Attachments:
-
-
Yes, a year and a half on Xeljanz. Most of that time I’ve been on 20mg/day
-
-
I'm sorry you're losing your hair on xeljanz, it will come back!
Do the doctor's understand why it's happening under the medication? Do they believe it's a flare?
-
Permalink Reply by Rascalx2 on
-
I had same spots appearing, shot in rear helped stop ir slow down balding shedding. I had hair covering spots but i cut hair short niw they are much more visible. Anybody tend to break out before spot starts? Ill have some pimples start then hair starts forming bald spot,.. so anytime i get a pimple on back of head I worry its start of a spot... overall happy w xeljanz results, i was AU before xeljanz.., full eyebrows, beard and head... lack alot on rest of body, 3 hairs under arm pit, thin on top if head,.. can see scalp with bright light... before I went AU 2 years ago., i had real thick dark hair.... dont take this as complaining.. I was in despair 9 months ago.. feel pretty much back to myself nowadays. Fear is still present, it may all fall out in 2 weeks Noone knows.
-
-
What dose are you on? I'm sorry you're losing the hair while on xeljanz this scares us all.
-
-
Wondering what the shot in the butt was? Something to use in a "xeljanz emergency". . It's such a scary thought that this may not always be enough to keep the devil at bay. Hopefully it stops and your hair returns to normal quickly. Hard, esp as hair takes soo long to grow. It's not something that is back to what it was two weeks after the fall stops...
-
-
Shot was cortisone in bilateral glute med muscle., same thing as shots in bald spots. It doesnt have the side effects that come with oral steroids such as prednisone. I
-
-
Been thinking of you Katrina since the last post. I'm really glad that it seems to have slowed. The pictures show so much beautiful thick hair around the thinner area so hopefully the loss has happened and you have plenty to conceal while it grows back. I've got everything crossed for you.
© 2024 Created by Alopecia World.
Powered by
