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 bibby on
-
What we need the FDA to do is to officially recognise xeljanz as a medically recommended treatment for alopecia AU/AT/AA. It was previously suggested that September 2017 would be the month that they would make their announcement. I genuinely hope there is a further NAAF meeting with the FDA this month as this sadly just appears to be a face saving and platudide giving meeting. We sufferers of this disease need something concrete and binding to present to our GP's and dermatologists to convince them to prescribe Xeljanz at our appointments thus clearing the issues also for insurance company cover.Without the FDA recommendation we end up performing an actual sales pitch at our med appointments which lets face it most of us are too depressed to do so.
-
-
Oh ok I get you, but would that not be on previous and current trials of xeljanz to be presented ? Would we have to wait till these trails are over or can FDA override the decision to make xeljanz applicable for us alopecia sufferers?
-
-
I believe most of the current trials are being sponsored by the private sector (i.e. pharmaceutical companies, Universities, etc.) and not by FDA. The above Public Meeting was an attempt by the FDA to understand and hear from the AA sufferers which hope to eventually recognize the disease on its own merit, and not as just another "non-life threatening" nuisance. Provided that we voice our pains and sufferings, and express enough interest (via comments website), FDA may officially recognize the disease and will qualify to receive Federal funding to initiate related studies, sponsor FDA trials, etc. which will eventually lead to AA focused treatment and drugs.
Drugs such as Xeljanze was not developed to treat AA; thus off-label treatment for now. I myself is benefiting from the treatment with Xeljanze but very costly.
-
-
The FDA has posted a full recording of the meeting and slides on their website:
https//www.fda.com. The meeting was held Sept 11.
Also, please note, the FDA cannot approve Xeljanz for Alopecia unless Pizer (maker of Xeljanz) petitions them to do so, which hasn't happened. They do discuss this in the meeting. Also, there are currently two companies in trials for medication similar to Xeljanz to treat Alopecia Areata. Concert Pharmaceuticals and Aclaris.
You can help by posting your experiences with Alopecia areata by Nov 13 on the FDA website. You can post anonymously.
See Sam's post above for the link to the meeting and the place where you post comments.
Thanks Sam for your post. We have to get the word out.
-
-
its a long road for having fda approved treatmwnt then :(
-
-
https://globenewswire.com/news-release/2017/09/05/1107619/0/en/Acla...
Is this good or bad for us ??
-
-
2031??
-
-
**9 Month update**
So, it's been about 9 months (actually 7 as I took 2 months off Xeljanz while I fought insurance to cover X) since I started Xeljanz. I've had AA for about 9 years and treated it with cortisone shots but it got really bad last November-December of 2016.
Currently, I have full regrowth of my scalp and eyebrows. My right eyelash is about 90% but coming through. My beard, which was the start of my alopecia, is slowly coming in. It's not my main concern as I prefer being clean shaven but it is nice on my off days. I don't have as much of a patchy beard anymore.
I'm on 2 pills a day and hoping to reduce to 1 by December.
No side effects. I've been super paranoid about weight gain so I've been on a strict low carb diet (20 grams a day) which is called the Keto Diet. I do treat myself 1 day a week with as many carbs as I want. I've actually lost weight. I also run 5 days a week for about 45 mins.
Other than that I feel great. My bloodwork was good in my last physical in August.
I was able to get my hair really short, like shaved short and there are no patches. My doctor is really thrilled and was like, "see you in 6 months!" I'm hoping these results last as my experience is my AA acts up in the winter.
- Attachments:
-
-
IMG_20160930_135130.jpg, 143 KB -
IMG_20170428_184901.jpg, 39 KB
-
-
-
Amazing mate ! You was AA always ? Let's hope 2018 something gets approved ! Thanks for the update pal :)
-
-
thank you so much for the update. Does your doctor plan to let you go off xeljanz for sometime?
-
Permalink Reply by Suzie on
-
Awesome news lcarusAlopecia! I also have had great results and it's only been since November of 2016. Weight gain not an issue as I have been working out regularly because I also have RA and it helps to keep that in check as well. But one MAJOR complaint is my energy level....some days I am just so exhausted that it's crazy and I can't stand it! After reading about Xeljanz that is a common problem with so many people. Has the exhaustion affected you at all?
© 2024 Created by Alopecia World.
Powered by
