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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 katiegirl on
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No worries! I feel the same way.if its just a cold it'll get better in a few days on its own anyways!
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I had one cold, and cough that took 2 weeks to go away, nothing serious, just congested. Lots of water and rest and it went away on its own.
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End of month seven and just getting first signs of terminal hair. I was so happy to see it, I actually cried! For those who are struggling, keep at it! Upping the dose to 3 a day really helped me.
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Permalink Reply by AlopeciaDestroyedMyLife on
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Fantastic news starshine!
So happy for you . You seem to be on a similar timescale to me so far .
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Thanks ADML, I agree, our progress seems similar, I am using your progress as my model. Are you still taking 3 pills a day? I was wondering how long I should stay at that dose.
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I've moved up to 4 for the past 2 weeks . Will stay at this dose for 2 months or so to see if anything is sped up. I would stay on 3 pills for at least another 3-4 months before deciding to up dosage.
Upping the dosage would only work if the immune system is still not supreseed enough. That's why I'm only going to take 4 tablets for a few months to see if this is the case.
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I noticed some stubbly growth after being on 2 a day for 4 months then going off for a few weeks per doctor. Called and went to doctor - more to satisfy both our curiosities. He was shocked at what he said was a combo of terminal and vellus hair. Put me on 3 a day, plus gave me an isolated cortisone shot. I went back last week for a three week check up. Blood work was good, hair was all but gone. He started questioning if it was going back on the Xeljanz - did that stop the growth? But we are staying the course of 3 a day plus 400 mg of Plaquenil - that is new. I run out of my copay Xeljanz in about 3 weeks. Seeing Dr King at the end of October.
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Got a cortisone shot to see if that will help and going to the doctor in 2 weeks and see about going on 3 xeljanz a day.I'm worried that if I ever grow hair I will never be able to go on a maintenance dose.Starshine how long on 3 pills a day did it take you to see the terminal hair?
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Football fan, I started 3 a day two months ago and it is very sporadic and mixed in with the vellus, but I definitely think that sped up the process. I am also taking Plaquenil 400 mgs. It is good that Summer is seeing Dr. king. Maybe she can get some good advice for those of us who are having a slower response.. Did you hear anything yet about the hardship program?
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Looking forward to seeing Dr King. I definitely think there is a lot of unknowns if the doctor is not familiar with Xeljanz. I like my doctor but after the first month he was surprised I didn't have re growth and after two months was throwing in the towel.
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Yes I got approved for the hardship program.The company my husband worked for got bought out and closed a year later run my someone who didn't know the sound business.So I was able to qualify just found out Friday and will receive my first bottle on Wednesday.Now I won't. Feel so guilty about being on it a little longer.My Doctor a endocrinologist was ready to throw in the towel with me also but now she will keep me on it longer.I wonder if those of us who aren't responding quickly just stayed on 2 pills would eventually have growth.Or if our bodies will only respond with 3.Still so many unknowns.Anyone on a maintenance dose yet and not losing hair?
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Thats fantastic news! Just remember that you have to reapply in November for next year. I am going to ask if they will pay for 3 pills a day. I think they will as they even have a stronger dose of 10 mgs. Taken twice daily. Summer, would you be so kind as to share what Dr. King has to say when yiu see him in October? I had an appt. with him next week, but had to cancel.
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