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 mastros on
-
Nice. Small hair here and there is a good signal. Hang in there. Good luck.
-
-
Hey, guys.
We have a new health alert on Tofacitinib in Spain. The government announcement is this:
https://www.aemps.gob.es/informa/notasInformativas/medicamentosUsoH...
My doctor has asked me to stop taking tofacitinib because of this and switch to methotrexate (I have full regrowth of hair with 20mg tofacitinib twice a day and he says this new medication will keep my hair).
Can someone who has experience with methotrexate advise me on this?
Thank you!
-
-
Nat - I google translated. I think it’s the one on blood clots in RA patients over 50 with at least one other cardiovascular risk factor on the 20 mg a day dose. My own view is- try to get to the lowest dose to maintain (over time of a slow decline of the mgs per day, adjusting for flares), talk to doc about a blood thinner to use in conjunction, if you have risk factors - ie obese, high blood pressure , certain birth control tabs think about approaching treatment options with your doc. While this result is annoying remember to keep the study in context with the population on which the study was performed.
Rew- I used methotrexate before Tofacitinib - it was fine - I didn’t get many of the ghastly side effects many talk about - I felt fine, good even- but I got no hair growth. I don’t know if once growth is established if it would be enough to maintain or not and suspect this is different for each individual. Make sure you get a good folonic acid supplement to take with it because you need to mitigate the loss of folate from your system as that will cause significant hair loss without active AA.
-
-
Hi Nat - I’m done to 16 mgs now - but I trying to prep my body for being off it circa a week around my minor op in late June so I’ve only just reduced from 20. Once I can go back on I will go to 20 for awhile to try and head off any post op inflammation flare before very slowly trying to reduce. My aim is 10 mgs a day but I’m in no hurry to get there. I feel like reducing the med needs to be done quite slowly over a long period of time so the body doesn’t flare up. I hope that in 2 years I’ll be on the 10mg, but flares and the condition itself could change this timeline. Outside of alopecia I am healthy at the moment- BP good, weight in normal range, bloods coming back pretty good (gotta watch iron and vit d), trying to chillax about life, No drinking, smoking, or recreational drug use (no judgement to others though) but I feel that mitigates some of the risks of being on a higher dose. I honestly do feel that some people may be able to come off without losing all their hair-it would be a long process of incremental dose decreases - the problem is that no one knows who will lose it all and who will be fine, and given the trauma the condition causes one has to be mentally prepared when coming off the meds. I agree with what Mastros said below- the study has not been completed, and the population of the study is relevant in the outcomes,
-
-
This was raised a few weeks back. I am copy pasting my reply from back then
"This study was designed to assess the risk of cardiovascular (CV) events and therefore in contrast to previous tofacitinib studies, patients were required to be at least 50 years of age and have at least one CV risk factor to be eligible for participation in this study."
The main CV risk factors: https://www.world-heart-federation.org/resources/risk-factors/
Also, the study is on going https://clinicaltrials.gov/ct2/show/NCT02092467
The statistics behind it do matter a lot.
Let's judge after the methods and the results of the study are published.
-
-
Any Doctors in South Florida that have prescribed xelijanz??? Dont want to travel to NY if I dont have to, thanks!
-
-
I've never heard of this one. My world of ED drugs is summed up by the titles of Viagra and Cialis and the generics. Just check the article about the pills https://www.lq3pharma.com/mens-health/cialis-professional-tadalafil/. I seriously doubt that there might be a need in any other additions.
-
-
Unless there is a novel new study showing ED drugs can grow hair I think you’re on the wrong website!
-
-
Last year naaf (national alopecia foundation) said they would have 2 treatments by 2020.Now I just read 2 treatments by 2022.So silly probably never have a treatment insurance will pay for .They have been doing clinical trials for almost 5 years on drugs that are working for the majority of people with aa that are already prescribed for arthritis.Thank God for Beacon Pharmacy and helping people get their lives back!
© 2024 Created by Alopecia World.
Powered by
