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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 Nick Barlulis on
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Don't forget ADML. It took him almost six months to see results. This is not an overnight remedy. We all will respond differently. I am AU and I see times when my hair is trying to grow and when it doesn't. I think we all enter different phases of the disease. I am currently on no medication. My insurance will not cover Xeljanz. Be patient, and remember odds are that you are closer to regaining your hair today then you were yesterday.
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Have any of you used methotrexate? If so what were the results? My daughter has been on the weekly shots and we only had 25-30% regrowth.(6-7 months so far) I'm also hopeful insurance will begin covering this drug once FDA clears it for use.
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Hi Nick, thanks for the encouragement and you are right to remind us to be patient. I hope Xeljanz will become more accessible for everyone to try sooner than later.
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Thank you for your encouragement, Nick. I love the last sentence about being closer today than I was yesterday.
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Starshine, my doctor didn't say why some don't respond as quickly, but he did say that I shouldn't worry until at least 4 months. Let me know if you get any explanation from your doctor please.
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Permalink Reply by DJ88 on
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I was thinking, is it possible to use other things with xenjanz to speed up the process? Like, I heard of people using minoxidil but what about cortisone shot and maybe a steroid cream? From what I've been reading, no one has experienced any hair loss at all while on this thing. So wouldn't adding things like this be more efficient in this case?
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Permalink Reply by AlopeciaDestroyedMyLife on
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I use minoxidil , it's hard to say if it's doing anything but it's worth a shot. I also use nanogen hair growth factor.
I would be careful with intralesional steroid injections , I know it mainly effects the area it is administered but it will still be in your system and mixing both these powerful immunosuppresants is dangerous. As for steroid creams I highly doubt it would do anything to help plus again you have that risk factor allbeit much smaller.
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Hi,
I hope you are all well.
I am new this forum, although I have been reading everyone's comments over the past few weeks.
I am from London, UK and I have been suffering with Alopecia for 17yrs. Mainly with AA, but have been suffering with AU for almost 4yrs. Like others, I have suffered mentally, emotionally and of course physically to a detrimental effect. I too know the agony Alopecia causes and I'm still finding it difficult to cope with today.
After reading about the breakthrough with Xenjanz, I too contacted Dr. King late last year and managed to meet him and start the medication in April this year.
So I am on wk 7/8 on the meds and I too haven't seen a response like most others. So far no serious or concerning side effects. I do feel a slight discomfort in my stomach in the early hours of the morning after taking the tablet in the evening, but that is it. I have noticed an increase in my appetite and my scalp has become darker (which I hope is a positive sign) I'm trying to stay positive and believe that it will work, but after spending so much time and money on previous "cures" that didn't work, I'm hoping that this will end up in a more positive outcome.
I could go on about my thoughts on Alopecia, but I just wanted to know for all those that have seen some response from Xenjanz, did you do anything different (diet, exercise etc)? Just seeing if there is anything else I could try to help the process along.
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Hi LSWA, did Dr. King have anything to say about why some of us are slower in responding?
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As with anything medical, it all depends on the individual and how their body works.
Dr. King showed me pictures of various people who has results after 2wks to those who took a year to get little hair.
Which is why I'm curious if anyone else may have changed something in their lifestyle to help the process.
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Hey.... I hope you saw my post earlier. That pain in your stomach concerns me. I ended up in the hospital with Diverticulitis after two weeks on the drug. Make sure you don't have any gut issues that could leave you vulnerable to infections. Good luck, and be patient. I have hope it will happen for you.
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Has anyone tried getting their prescription through a rheumatologist instead of a dermatologist like Shanna said? To get this covered? I was just wondering if that worked for anyone else. Also, do anyone here think this would work better for someone that always has some little white hairs?
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