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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 Linda on
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Hello sorry I know this is long after your post. I just logged on and had never heard of stopping Xeljanz prior or after the Covid vaccine. My physician never recommended that. I started 5mg Xeljanz twice a day in May and I had complete hair loss I believe its called AU?
I now have about an inch and a half of pure white hair that has grown back. Reading these posts the doses seem to vary. Perhaps because I am on a low dose they never mentioned the vaccine, but certainly good
to know!
Thank you to everyone that shares information greatly appreciated!
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Need some advise - I’ve had diffuse alopecia for about 4 years. It was a slow loss of hair all over my head. About 16 months ago I started Tofa 16mg from Beacon. Didn’t get any results and kept losing hair. After 11 months it stopped the hair loss. Didn’t grow any back but was happy that it stopped even though it’s tough doing anything with what I have left. 3 weeks ago the shed started again and it’s very excessive. I’m so desperate I did a PRP session today even though I did it 4 years and it didn’t help at all. I’m getting married in 5 months so just hoping to make it by then with hair. Does anyone have any suggestions? Should I up my dose or something ? Please any advise will be helpful. Thanks Alo fam
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Have you ever had a prednisone pulse? My dermatologist had me take prednisone for the initial month of getting onto methotrexate a few years back. She said that it would stop the loss and initial regrowth and then the other medicine would have time to kick in and take over. I believe I took 40 mg of prednisone each day for two weeks, then down to 30 mg. for two weeks and so forth until I was completely weened off the prednisone. It truly jump started the growth and put the hair loss into a halt. I am on Beacon 20 mg./day and my hair is long and full. Although, the prednisone made my hair grow everywhere on my scalp. My hair is a bit thinner on my forehead then the rest of my head, but I am just fine with it. I was on my way to totals when I started this regimen. I pray you get some medicine that will allow your wedding dreams to come true. Brides should not have to worry about this with everything else they need to focus on. Best wishes. :)
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Hi Joja,
I think tofa is not for diffuse alopecia, isnt it? Because tofa is for the autoimmune disease...
I guess that for diffuse the solutions goes for dutasteride or finasteride with minox...
Or am I wrong?
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I have one question for the people taking tofa with success results.
Are you continue having small spots that appears and dissappears or did you recover your hair completely without spots while you continue with the treatment???
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Hi,
I recovered all hair from AU. Had no spots for 18 months, have one big spot now. It appeared 10 months ago, then grew back , then appeared even bigger - I increased the Toga dosage and wait.
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Hello everyone,
Sorry for not replying, it turns out Pfizer added another year to my trial so I don't have to worry about getting meds yet! Very exciting. One question though, has anyone had surgery while on these kinds of meds? If so, did you have to stop taking the medication and was there any hair loss? I might be having a somewhat minor surgery and I'm scared the stress will make me lose my hair.
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I had surgery on my meds, and had no issue. Ovbiously it depends on the surgery. If it is major surgery like a joint replacement, you probably will need to stop it. If its something minor or even somewhere in the middle (like me) you don't need to, but I am not a doctor, and I would ask them.
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Hi AlI
I read that some of you are getting your Zeljanz from India. I ordered from India Pharmacy 8/12. They are say it’s been in customs for 4 weeks. Has anyone had this problem started to wonder if it was scam. I desperately need to start!
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Hi Lori,
My first package from Bangladesh was 4 weeks at JFK customs. Then it was released.
Do you have a tracking number? My tracking number was showing that the package was in customs.
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