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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 Ron's mom on
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So great Mashloum, he must be so happy! Can I ask you how much your sons weight is? My son is 12 years and his weight is 45kg so his derm has started him on 5mg ( on half tablet in the morning and one half in the evening). I am just wondering if that will do without increasing the dose, but I guess we have to wait and see. He started 10 days ago so we are crossing our fingers that this will work. Again, congratulations on your results!
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Permalink Reply by Mashloum on
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Hi Ron, I am happy to hear that you started with the medication, just keep hope always in front of your eyes, you will notice small white hair after 30 days, my son started one year ago, his weight is 33 kg and I started with him on 2.5mg for 90 days and then increase it to two half’s one half at morning and one half at night and it works well by noticing the progress after 4 months when thing beacon more dark and filling started, but you will feel happy with each hair like raising a new baby or looking after your farm harvest, truest amazing feeling when you will take him to barber for first time after this, you cannot stop the.tears watching the reward for this efforts. Recommended to document monthly images as I shared for this wonderful group so you can compare the results, not to mention the lab test required
if you need any help in this regard let me know plz
note: feeling vomiting is normal at beginning so if you have that take him for ER and ask for vomiting injunctions to relief him. Also no need to increase the dose since the 5 mg over two half worked perfectly, but I notice that the original Xeljanz more effective than Pfizer Turkey my be I am wrong but this is my personal observation
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Thank you for your reply, Mashloum! My son was diagnosed in august last year. He first got one little patch that stayed unchanged for a couple of months and then he started to loose hair all over the head. In just about 5-6 weeks he had lost almost all and that's when he started to loose eyebrows and eyelashes too. The whole thing was really traumatic and so devostating to watch as a parent and not being able to do anything. I believe you know the feeling as we are in the same position!
We have been following you and other parents in this forum and your positive experience with this medication gives us so much hope!
We live in Norway where they don't offer this treatment yet so we were lucky to get an appointment with one of the world's greates doctors in the field, Dr. Antonella Tosti in Italy. She actually does practice in the United States but does also see patients in Italy a couple of times a year. We also have a good dermatology physician here in Norway who has been following all the research and is supporting and following up my son with necessary labs as he also believes in this treatment. We did buy Xeljanz in Turkey from a serious pharmacy and believe that it's original Pfizer.
As to side effects he had just a little headache and felt a little tired the first 4-5 days but says that he is fine now.
Hoping and praying that new research will bring more options and safer treatments for everybody who suffers from this terrible condition in the nearest future!
I will keep you updated on his progress :)
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Permalink Reply by Sad_Rapunzel on
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Could you please give contacts of this doctor?
I'm in US now and need to be seen by real specialist and not somebody who just want to make more money on my struggle.
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which doctor is the best there?
Yes, I'm in NY.
Because I already visited Catherine Ding and Dr.Bruder and they were nor helpful at all, suggested ONLY rogaine...
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Did they not say it was Alopecia?
I can't see anyone else saying something different in that group, but maybe check with Doctor Bordone .
I recommend asking for a blood test .your next step would be to go to nyu and see dr shapiro
Or go to yale
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No, they didn't say that. dr bruder wanted me to do biopsy, because in my blood tests there was negative result for autoimmune diseases.
And Dr.SHapiro cost like 750 or even 1200 for One consultation...
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Hello. So glad to see ur sons regrowth.. Actually i m new to this. Group and has no clue.. My son is 14 and half suffering From alopecia 50%of.the hair. R. Gone . I m from Pakistan and. Tofacitinib not aviable here no pharmaceutical manufacturing it yet as pr my knowledge What u suggest what should i do for a treatment option?? Regards
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I am so happy for you and your son. My son was about 16 years old when diagnosed and you are so right about the tears of joy when you see a full head of hair. I had those same tears when I saw 1 inch long spots here and there over his head. He wore a hat for the first few months so I didn't know the progress he was making until I saw at the doctors office when he removed his cap. Then the hat went on again for another 4-5 months until he asked his sister to help him with a haircut. To this day, as I see him go out and about with his life I give thanks to God for him being able to live his life...with hair.
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Congratulations! We just started our 16 yo on it. We are hoping it works! She does get intermittent GI pain; does anyone else get that?
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I believe that's a normal side effect and some people do experience that when they first start the medication. For some it will get better after some weeks as the body adjusts to the medication, but I also know that some people are needed to go down to 1 tablet for a while and then increase the dose back to 2 tablets when the body gets used to it. Anyway I believe that it's best to ask your physician if she is experiencing a lot of pain as this is a serious mediaction.
We have desided to start our 12 yo on just 5 mg. He takes one half tablet in the morning and one half in the evening. We are 10 days in and so far he just felt a bit more tired than usual and had a little headache the first 4-5 days.
Wishing your daughter a full recovery!
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