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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.
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AW: Other discussions on Xeljanz / Tofacitinib
https://alopeciaworld.com/main/search/search?q=Tofacitinib
Replies to This Discussion
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Permalink Reply by Starshine on
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Thanks for the encouraging news, Football Fan. I hope it does get approved this year. I wonder if it will work as well as Xeljanz for the people who have success with Xeljanz. I feel your pain in not getting all your hair back. It definitely sucks having to put a wig on all the time, and I know you have tried everything. And yes, congrats, Katie girl on all the precious additions to your family.
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Permalink Reply by sadele on
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I have a question, does anyone have breast implants? I'm asking because I have them and have read a lot of Breast Implant Illness and it being linked to hair loss... just curious if it's just me that has them and got alopecia or if it's a common theme with women on this forum.
I just started taking Spriolactone yesterday (100mg) as I also read it works well with oral minoxidile which I also take.
Does anyone on here still see Dr. King? I use to see him but haven't in a long time...
I did get Covid at the end of January, do you think I could be shedding a lot right now as a result of that?
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Not sure about the breast implants, but I lost a lot of hair three months after having Covid. It lasted for about a month and then stopped. Derm said that was very common after Covid.
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It could be possible, they say Covid hair loss can happen anywhere from 3-6 months. Not sure about the breast implants but I have heard this also.
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Permalink Reply by Jcortez05 on
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My husbands cousin was getting very sick with her implants and had hair thinning - she took them out and she said almost instantly started getting better. Felt like a new person
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I lost a lot of hair after each and really every vaccine. Then I got covid and it was more shedding than spots. My hair dresser said she sees shedding all the time after covid
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I take supplements and I have really seen an effect
blackcurrant in addition is natural cortisone (anti inflammatory)
it can only do good
I also take several supplements for health red yeast rice (cholesterol)
royal jelly (immune system)
Marine collagen (joints)
black radish (liver)
with the side effects I try to counter these side effects
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Hi Sunshine, been ages since i was on here, due to busy life, and life events. I have been on beacon tofacitinib for over 4 years, lucky to get full regrowth. I think hair fall after any bad infection is common. Body ramps up it’s immunity to attack the virus, unfortunately it means in those of us with autoimmune disease it just goes haywire. I haven’t had covid but have had some very slight shedding here and there when i get stressed. I usually bump up my dose as soon as i realise i am getting stressed (for example when my mum died) and this seems to have helped. I did this when i got my vaccinations too, which might reduce their strength for for me a necessary step as heard of some others getting spots and flare ups. Usually this spots or flare ups resolve in a few months so try not to worry.
i am currently on 11 mg every other day, but when i hit those “dangerous” times i go ip to 22mgs a day for the entirety of the episode. So far this has worked. Funnily enough i’ve read articles about Jak inhibitors being useful in reducing bad outcomes with covid. I think this is because many of the more serious complications are caused by the body going into inflammatory overdrive.
My method of ordering from Beacon is the same as Football Fan, typically takes three weeks from initial order to getting the meds. I am very impressed with Beacon, they managed to keep going even over Covid.
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Hi Frida,
How do you pay Beacon? I am trying to use RIA and the payment is being rejected. Transwise doesn't work anymore.
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Hi Nat, i set up an account transfer through my bank. I pay a small fee, then i just email the payment receipt. I think it takes a few days to get there but it worked as recently as a few months ago.
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Hi Nat, i don’t know if it’s an Aussie thing but i just set their Hong Kong bank account as a payee and can do it all through internet banking. It means adding 25 bucks for the transfer fee’s which a bit of a rip but worth it for the ease and lack of worry.
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