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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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Replies to This Discussion
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Permalink Reply by mtran2000 on
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Regrowth looks good. I keep waiting for mine to happen. Lots of body hair growth but none on head. On month 6 of Xeljanz.
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Giusep,
I am very sorry to hear about your wife. I followed your story closely and you really gave me hope when first starting xeljanz. I recently came off of xeljanz to start a family. I stopped July 1 and have not lost any hair to date. I may be lucky or it maybe just hasn't happened yet. I agree with xeljanz miracle that starting a family may be more important. That is why I stopped. I am nine weeks pregnant and I have read that sometimes during pregnancy alopecia improves. Of course people can also lose it but I've read more positive than negative. I don't know if it's just wishful thinking but I do have a ton of new eyelashes on my right eye that I haven't had in over a year. I understand the choice is hard and I also know that if it happens to me I did decide to stop the xeljanz. Best of luck to you and your wife. I think after all of this I can finally say that there are more important things than hair it's all a matter of loving yourself and your significant others.
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Permalink Reply by Xeljanzmiracle on
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CONGRATULATIONS Katiegirl!!! You accomplished your goal.
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Permalink Reply by Giusep on
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Wow I am so happy for you that is awesome news!!!! Congratulations!!! I wish you and your husband the best of luck. Please keep us posted on your progress through out your pregnancy.
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Congratulations on your wonderful news!
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Congratulations on the pregnancy! I wanted to chime in and tell you that I had AA prior to pregnancy and my hair looked great during my pregnancy- no spots for the first time in years! However, the post partum shedding was intense and my battle with my hair led to AU. I noticed my first spot around 2.5 months post pregnancy and started cortisone shots again the following month. I would discuss with your doctor starting back on Xeljanz soon after your pregnancy if you don't plan on nursing.
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Permalink Reply by 3ebdie on
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Really sad but at the same it would be very interesting to see if her hair will come back now the same as her first response 2 years ago. Please please keep us updated with pics. One question did she had any unusual shedding of any hair while she was on xeljanz for 2 years?
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Permalink Reply by Rascalx2 on
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Hey everyone, been on xeljanz 3 1/2 months and have nothing. Pitting on nails seems to have increased (worsened). Been lacking hope, and think if i dont have any change at six months I will probably discontinue using xeljanz. I have 4 yr old twins and when I am with them it is the only time Im not down about my AU. The longer Im on xeljanz, the more I have concerns with health and future of negative effects from drug. The most important thing to me is being bealthy and being around for kids. Hope everones positve results stays positive!! Its worth getting off drug to have family!!
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I also have 4 year old twins so I completely understand how you are feeling. I did not see much progress in the first few months and really felt disheartened at that time. I had to do three months of a prednisone pulse two times for it to really come in. It took me a little over a year for my hair to fully fill in. Other people can chime in. Don't give up hope just yet!
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