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 Xeljanz2015 on
-
Here's new pictures from today. Feels great to have my hair back after 18 years of AU. I hope all of you experience this feeling! Never give up! Best wishes to all!!!
- Attachments:
-
-
image.jpeg, 366 KB
-
-
Permalink Reply by Talia on
-
Wow! U look great! I remember when I used to complain about the head full of hair I had...now I will be grateful for just a little bit of hair! Enough not to wear a wig anymore if I don't want too! How long have you been taking Xeljanz? How did u get your insurance to start paying something?
-
-
Wow that looks really good what dose were you on and what dose are you on after the full growth also how long before you saw results. Thanks
-
-
I'm about to finish my 12th bottle of Xeljanz. I'm still on my initial dose of 2xday, but it's been a long journey. I started around feb/mar last year buying with the copay card because my insurance wouldn't cover it. We appealed and had an external review done and after a few months insurance started covering. I was off Xeljanz for a few months in between appeals, but luckily I didn't lose any of the hair that started growing. I was about to give up around December because even though I had some hair, it just wasn't enough and I still had bald spots all over the place. Then we tried prednisone pulse and I didn't like it at all! I started Rogaine and saw a little improvement, but yet not enough. It was really about 3-4 months ago when I started Spironolactone that things started getting better and remaining spots got filled. I currently take Xeljanz 2x/day Rogaine 1-2x/day Spironolactone 100mg 2x/day and MSM 1500mg 1x/day
I still have 4 spots that need more hair, but can't really be seen, so I'm happy this way.
-
-
You look wonderful!!! What a great response! Congratulations and thanks for sharing!
-
-
Talia, what insurance do you have? I have Carefirst and get mine filled through CVS Caremark with no problem.
-
-
Starshine,
CVS denied my Rx for Xeljanz because it's being used off-label for alopecia. So I am going to transfer my Rx to a different pharmacy. I won't have any insurance as of the 1st anyway. I'm getting laid-off tomorrow after 15 years:(
-
Permalink Reply by Jcortez05 on
-
I don't understand why cvs would deny bc it's off label .. If your dr is prescribing it it should not matter . I use my copay card at cvs although it's just for the part the insurance doesn't cover. I'm going to switch from cvs back to Walmart next month also bc I just prefer Walmart specialty better service and quicker and no issues
-
-
Thanks everyone I will keep you posted!
-
-
From what I understand plans can differ...so your plan may cover off-label drugs and mine doesn't. Very tricky!
-
-
But aren't all copay cards the same ? My insurance plan doesn't cover off label "according to them " but they approved mine.. And I didn't have insurance when I was using Walmart specialty I was simply using the card
-
-
I was told since I was denied due to an "unapproved" diagnosis I can't use the co-pay card either. The co-pay card is only used to supplement what the insurance doesn't pay for approved medications. BUT when I become uninsured it will be a different ball game. Claims are submitted differently when you are uninsured. Private insurance can be a pain to deal with at times.
© 2024 Created by Alopecia World.
Powered by
