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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 Football fan on
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I live in Los Angeles went to Dr Strick who is suppose to be an expert on Alopecia it's his specialty always people with Alopecia in his waiting room.Absolutely refuses to prescribe xeljanz even when a Dr from the Stanford trial called him on my behalf.I was lucky enough to get my Endocrinlogist to prescribe it for me but I am her only patient on it.Way to expensive to do 3 pills a day.
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Thanks for everyone's help! How much plaquenil are you taking Julie
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Hi Football fan. I am also taking Plaquenil 200 mgs. twice daily as well as cortisone shots. Definitely worth a try. Trying to get free samples from a rheumatologist to try 15 mgs. A day, at least for a little while, is also a good idea. You are definitely not the only one who is having a slow response and totally relate to your frustration.
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I would definitely try to get some free samples from a rheumatalogist. they prescribe it all the time for rheumatoid arthritis so many of them have it in their offices. This way you can at least do 15mg for a even a few months maybe kick start your immune system. If not consider adding something else. if your dermatologist won't do that than it is probably a good time for a new doctor. My doctor is not the most experienced but she isn't afraid to try things. start another separate forum on here specifically asking people in the los angelos area who they go too. this forum is too many pages and you may get mixed information.
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Hi Football Fan,
I was also a patient of Dr.Stricks's for over two years. I saw him twice a month. He also refused to try any treatment but DNCB or Squaric Acid.
I spent a fortune seeing him (and driving there from Calabasas in rush hour) andi never got any regrowth.
I left him and found a fantastic dermatologist in Encino.
He worked with my primary care doctor on a treatment for me (cyclosporine andprednisone) and the dermatologist injected shots into my eyebrows and my lash lines. It worked for a while Hutu ended it myself to get off the prednisone.
Anuway, my point is that I was really disappointed with my experience with Dr.Struck.
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Hi HS I drove from Northridge took forever and tried the DNCB for nearly a year it was a horrible experience would wake up in the middle of the night scratching my scalp raw.And all for nothing.He's retiring this month spent a fortune also.Are you on anything now?
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Permalink Reply by Steve on
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All these stories off Xeljanz make me so happy for everyone. I truly wish you all the best. However at the same time they give me a gut wrenching feeling and sadness as it is something that I can't try myself. I truly wish this was available in the UK.
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Xeljanz is available in Turkey, the cost is about € 540 per package, is not far from uk, I'm thinking of going to Turkey to buy it
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Permalink Reply by Xeljanzmiracle on
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Is that 540 Euros? How much is that in American dollars? I'm being lazy, I guess I can Google that, lol!
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Just remember there are other drugs in the pipeline Baricitinib is getting close to FDA approval and will have a much safer profile that should certainly pass UK standards. Hopefully they will do a lot of alopecia testing once out and get approval for it to be covered by insurance.
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I'm going Turkey beginning next year. I decided I have go it alone.
If I wait for it to be available in the UK it can take years and I want to try and get my hair back while I'm still in my youth not when I'm old and its to late due to old age.
I had AU for 12 years and fed up wearing a baseball cap.
I decided I'm buying 7 packs.
I will take 1 tablet twice a day first 2 months
Then 1 tablet 3 times a day for 3 month
I will then reduce back to 1 tablet a twice a day
If it works I will continue a few months bs reduce to 1 tablet a day then 1/2 as some point.
I will use minoxidil twice daily to boost the hair.
I hope it works and most important that it won't relapse..
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