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 Hopemom on
-
You are right. It is Ruxolitinib but added deuterium chemistry technology. I hope to learn how it works for company to state that it is a safer and more effective than old Ruxolitnib.
-
-
I am now 7 months using Tofacitinib and I decided to give back to the forum that helped me. A brief history.
I have AA since my early childhood. It was manageable and it used to come and go. 2 years ago I started losing my beard and 1,5 year ago my beard was quite gone. A year ago I started losing hair quite aggressively and last April the situation was quite bad. 2/3 of my scalp were gone, my beard almost all of it and my eyebrows were heavily influenced also, along with the eyelashes which were gone on the upper side.
I searched about medical solution (since before whenever sth was showing up, I was trying to pay attention to my diet and stress levels, taking a multitude of supplements and last year nothing of that was working).
I found that one can buy Tofacitinib from Turkey with no prescription through this forum and I took a leap of faith. Went there and bought it from a pharmacist right in the center of Istanbul (https://www.rebuleczanesi.com/). I had called the pharmacist before hand which has a 24/7 whatsapp btw.
For the period
- beginning of April - beginning of July I was on 5mg twice per day: my progress was negative in the beginning since JAK inhibitors take time to respond (if they respond) and then I was kind of stable
- mid July - now: 10mg twice per day and after a month I started seeing clear improvement on my right eyebrow, eyelash and head.
I am continuing in 10 mg. I have attached photos of my progress in a izp file
============== Doctors ======================
I am providing some information on my process to find doctors to help me.
While searching for information about JAK inhibitors and where I can buy it with no prescription I had e-mailed tons of people from different universities both in US and Europe that were involved in JAK inhibitors researched.
After persistence 6 universities had replied:
- Emory in Atlanta saying that they cannot help
- NYU which requested a ridiculous amount ($4K) as a deposit to have an appointment with them because I am living in Europe and I did not have US insurance
- University of Zurich that requested $1.5K as a deposit
- University of Lubeck in Germany that requested 5K euros
- UMass that said that I can have an appointment with Dr. Harris in May with a price ranging from $230-$400 for the appointment(https://www.umassmed.edu/vitiligo/about/director-john-e-harris-md-phd/)
- Yale that said I can have an appointment with Dr. King in Sep that will cost ~$400 (https://medicine.yale.edu/dermatology/people/brett_king.profile)
All the above required a shitload of phone calls and it was super tiresome btw. I decided to go in May to visit Dr. Harris since he was the quickest and most responsive and plus did not cost a ridiculous amount. He has really provided me with a lot of help and monitoring since then. He is super friendly and open to discuss potential solutions. Really professional and caring doctor.
I have also visited Dr. King in September which is super engaged and also friendly and guides my whole therapy.
I do have a doctor in the Netherlands (where I live) that knows Dr. Harris and follows my medical blood work and monitors the situation from the Netherlands. His name is Dr. Bekkenk, works in AMC (https://www.amc.nl/web/Research/Overview/Departments/Dermatology/De...) and has an attitude that is super not usual for doctors in the Netherlands and is also helpful and I appreciate his help.
- Attachments:
-
-
aw.zip, 3 MB
-
-
-
Good job man
-
-
are they still offering xeljanz in Turkey without prescription. My only fear is someday they might decide to change the policy and do require a prescription
-
-
no not at all. Just putting my thoughts out there
-
-
as the two doctors suggestions you will take the drugs for 2 years or 3 years or forever?
-
-
I live in turkey.Still no prescription needed.But what happens in the future is unclear.
-
-
Maestro- you are amazing! thanks for putting out all that info.... If/When I have a bit more success with my treatment ( Im still on the fence as to whether I am responding or no- may try steriod pulsing to try and get the show on the road) I will also provide a less detailed (My docs for example, don't want to be inundated which I have to respect) narrative about how I got onto Xeljanz and how I get my meds etc (it also involves international travel and connections!) What we have to go through as Alopecians for treatment is really hard let alone the cost of treatment.I just wish that one day soon there will be a chunk of medical staff that realise the implications of this disease on our mental health is HUGE and no providing us with economical and accessible treatment is wrong ( as patients we show be able to decide, for example, how aggressively we want to treat the condition given that we are the ones who live with it).
Thanks again Maestro- Im sure your post will help lots of Alopecians move forward with their treatment....
-
-
i totally agree with you
-
Permalink Reply by Suzie on
-
So happy for you!
I have AA and now I'm afraid I have something else going on as well and will find out soon from my dermatologist who took a biopsy last week. My hair is thinning, no more patches, just thinning. My patches filled in after about 4 months of being on Xeljanz (5 mg 2x a day).
I've been on Xeljanz for a year. Been under a lot of stress on and off in that time, so not sure if that is why it's been falling out or not. I also have RA, so once again, not sure if that is factoring in all of this. But I've heard of people going on other biologics such as Enbrel, Humira, etc,. for RA and them losing all of their hair. So this is just very, very frustrating and confusing!
But its kind of disappointing since this drugs was originally made for RA patients.
-
-
Hey, does anyone know if it's safe to consume Tofacitinib Citrate powder if you use a tablet press and take it in pill form?
Find it impossible to get information on this, please help. Thank you.
© 2024 Created by Alopecia World.
Powered by
