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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 Xeljanz2015 on
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Ujjain, My doctor prescribed me the 300mg of prednisone to take once every 4 weeks 3x total and those 3 days no Xeljanz, but that was after not seeing any improvements with Xeljanz for 3 months. The combination will lower a lot your immune system and you can get very sick easily, so be careful and get checked by a doctor.
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Hi.
I am glad to see you writing here again, I think you were gone for some days?
Can you help me: My daughter is now taking two tablets of xeljanz every day, we are still in Turkey, shooed she take three?
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Aurora Sophie, I don't think she should take 3. All doctors start with 2/day. Give it time to see how the 2/day will work. Make sure she's getting her blood work checked.
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Permalink Reply by Jcortez05 on
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No continue with 2 .. I've taken 2 a day and sometimes even missed a day and my hair is growing well.ive had lots of tests done to rule out certain auto immune diseases all came back negative .. Of course haven't tested for every single thing but the one thing I do know is that I've severely low on vitamin d and I have several allergies .. I have 100% hair growth now but about 1/4 of it has pigment .. It's a gradual thing . I've been on for 3 months . ... Be patient
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Hi
Thank you:)
Also nice to know that we have to be patient.
What kind of allergies do you have?
My daughter also has low D vitamin, but when she was taking tablets with different d vitamins in, it did not get better, so I think she must have some kind of malabsorption in her intestine.
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Hi
Ok thanks
She has had really bad headache this night, but in the morning I gave her tablets and now the headache is gone. She also feel nausea, it was quit bad tonight, now she feels better.
Do you think we have to take blood tests of her before going to U.S. in end of next month?
I dont know what kind of bloodtest to take. And our familydoctor even he does not know that he said.
Thanks for your help
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Hi
Ok thanks
She has had really bad headache this night, but in the morning I gave her tablets and now the headache is gone. She also feel nausea, it was quit bad tonight, now she feels better.
Do you think we have to take blood tests of her before going to U.S. in end of next month?
I dont know what kind of bloodtest to take. And our familydoctor even he does not know that he said.
Thanks for your help
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I would personally ask my GP for blood tests. I'd expect a GP to know this or at least be able to find out... how shitty are you at your job as a doctor if you say that don't know and don't even bother to try and find out.
I asked my GP and he said I could do blood tests via the NHS. I'll do my first after 1 month of taking Xeljanz as I've not had any sides yet.
Find another GP/doctor and if he refuses, then make an appointment with a 3rd GP and tell him she's feeling very tired all day for the last months and would like a full blood test done.
The girl at http://blog.baldgirlsdolunch.org/treatment-for-alopecia-areata-with... said she just had high cholesterol, other bloods were fine, so maybe it's just a generic blood tests that checks for like 42 common things, vitamin d, vitamin b12, thyroid, cholesterol, etc. etc.
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Permalink Reply by Rach1992 on
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Me! Just found out two days ago. I take 2000 IU/day now and drink a cup of almond milk, too. Hopefully that will help
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Permalink Reply by Jckah on
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Hello friends. I figured I'd let you know, I've been off xeljanz for two weeks (my 7 month mark, which was my personal deadline, I didn't want to take this for too long) and I've had no changes to my hair, still growing, no abnormal shedding. I'm sticking to my gluten free diet and keeping positive thoughts, but that's really all I'm doing to maintain. My Dr. is going to contact a pharmacist he uses in Jersey to compound the 4 bottles I have of xeljanz. Please send me some positive vibes, I'm thinking about all of you too :)
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