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 Frida Rupert on
-
Hi NewJack, hope you are well. Thanks for this bit of info. What I’ve heard is pretty similar - they are testing on RA rather than Alopecia, RA always have a prognosis that is worse than ours, as the disease is often attacking other internals. And the age group tends to have a higher median than Alopecia sufferers. I took my first dose 2017 and has be had no issues so far, I realise that’s isn’t necessarily everyone, but having been on it now for awhile, I hope that can be encouraging for those just starting. So grateful we have these options now....Even 10 years ago we were basically without options. I don’t think they can take these meds off the market - they are used in a multitude of conditions, and have shown promise in reducing the severity of covid in serious cases (baricitinib). I think they’ll only get better and more targeted and am really optimistic about some of the meds in the pipeline. So chin up everyone - I know it’s scary when these studies come out, but try not to let it make you lose hope.
-
-
Hello Everyone,
I have been on Xeljanz since July 2015. I was AU when I started, after having it for 6 years. The hair on my head never grew back 100%, I think it was about 60%. But my eyebrows, eyelashes, etc. all grew back. Suddenly, starting late December all of my hair has started to fall out again- no eyelashes, eyebrows, etc., and my head hair is down to about 10%. Has anyone else experienced this while taking Xeljanz? I take 20 mg per day.
Thanks!
-
-
Hi Noelle. Is it possible that taking it for so long the body somehow becomes immune to it? I don't know if that even makes sense..just trying to think. In this case would it be better to switch to another jak inhibtor?
-
-
I may have misunderstood but reading his/her comment I think he/she meant that he/she had AU for six years prior to starting treatment. I think we have flares, where the disease is so strong a shed happens, this requires either patience and nerves of steel to to deal with or a steroid pulse. I don’t think it because the tofacitinib stops working rather this disease waxes and wanes. It’s very hard to cope with and I would talk to your doctor about adding oral minoxidil or a steroid pulse or consider switching to baricitinib to see if that works better.
-
-
Has any of you accompanied xeljanz with strict diet changes such as gluten free ? Has that helped?
-
-
Hi! I have and I saw no improvement.. I also cut out dairy, soy, refined sugar, corn etc very strictly for 2 months and then avoiding mostly for 4 + months. I think it is very dependent person to person though. Hope that helps
-
-
I tried a Plant Paradox diet for 7months prior starting Xeljanz - no results and even lost eyelashes and eyebrows. I am on Xeljanz now and still trying to restrict gluten and meat - I still get spots.
I think that diet works for some people, probably, depends on the cause of Alopecia. My Alopecia is triggered by stress and seems like a diet has no effect on it.
-
-
Felt like sharing. Before xeljanz my nails got brittal. With xeljanz I have not had an issue.
-
-
Hi everyone, hope someone can help me. I was on 10 mg for quite some time and last month have been on 5 mg for one month. I have not had any loss or spots. Has anyone suceeded in staying at 5mg with no loss or maybe minimal loss?
-
-
Hi everyone, this is my first post on Alopecia world.
I’ve had AU for 22 years, with sparse regrowth all over my body over the years, but essentially still have AU.
Since the clinical trials here in minnesota started my mom
has been bugging me to get into a clinical trial. Only problem is, I definitely do NOT want to re-grow all of my hair only to have to lose it again because the trial ends. Which is what the U of M told me what would happen after the trial ends.
I’ve been reading all over reddit of people getting on oral jak inhibitors, regardless of the FDA status. I heard a rumor that “determatology specialists” in edina were prescribing them, so i set up an appointment only to be laughed out of the room by the doctor for even suggested that they might prescribe one.
Ug, so i’m back at square one. Can anyone help me out here in Minnesota to get on an affordable, insurance covered JAK inhibitor?
Thanks!
-
-
Hi Sam. It's really strange that they laughed because jak inhibitors are the future for alopecia and according to my understanding something will be approved in 3 years or so. Maybe not xeljanz but another jak inhibitor. Would you mind joining a group on Facebook called alopecia and xeljanz you can get lets of help maybe specifically from Minnesota. I know lots of people are taking xeljanz for their alopecia for years now.
-
-
Hi Sam,
I am sorry you had this experience. I hope someone on the forum can help you in your area. But there are a few avenues possible, I think here collectively have all gone through the experience of getting xeljanz and can help and give you support! And hopefully someone here on the forum knows someone in minnesota.
I suggest exhausting all xeljanz forum options as well and join the alopecia and xeljanz group and reaching out to see if anyone knows of a doctor near by the specializes in xeljanz and alopecia.
Your insurance most likely will decline the medication for you, but that is ok you can still get it from pfizer. Now you might ask, why the heck you need a doctor if pfizer can just give it to you? You need to be denied several times from your insurance before pfizer can give you the medication
Most of us have gone through these motions. We are all here to help.
© 2024 Created by Alopecia World.
Powered by
