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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 Nat on
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Hi DJ88,
Prednisone causes all the side effects above. They go away within a couple of weeks after stopping it.
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Hi Nat. I hear a lot about different prednisone protocols , what’s your experience with this in details please . Why did you feel the need to start prednisone alongside xelijanz ?
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Hi Meedo,
I used Prednisone to speed up the process. I wanted to have hair before summer 2019 to get rid of the wig and enjoy the summer.
It was my personal decision and it worked for me.
I used 2 different protocols. 1st - 60mg for 1 week, 50mg for 1 week , 40 mg for a week and so on. It worked but I lost all my hair when I stopped. At that point, I didn't know about Xeljanz.
2nd protocol - 60mg for 3 weeks, 50mg for 3 weeks, and so on. I used this with 15 mg of Tofa. I stopped Prednisone after 3 months, continue with Tofa. Hair is growing.
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Hi Nat. Thanks for coming back . So I guess that you started the second protocol same time as you started xelijanz? And if so this protocol is similar to dr king’s protocol 3 months 300 mg except for second and third months you are tapering down ? And also how soon after the steroid mini pulse you saw progress and how long since the commencement of treatment until satisfactory regrowth ? Thanks in advance
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Hi guys, there are few different protocols- I think it depends on the doctor and the access to various types of steriods as to what is used in different individuals. There are pulses that are monthly - usually prednisone - a big dose - say 300mg per month for three months- the benefit of this is no need to wean off, and many doctors are more comfortable with this method. There is also a iv administration of prednisone but it’s a pain as you have to go to hospital for the infusions which is usually expensive.
The other method, which I used, mainly as it was convenient and had very good results even without the use of Tofacitinib in treating AA, which was to take a dose of betamethasone or dextamethasone (which are longer lasting than prednisone and have a slightly higher anti-inflammatory impact) over two consecutive days of the week, usually at a dose of 5mgs per day. Staying at this dose for approximately 3 months and then weaning down by dropping 1 mg per week (so go down to 4mgs a day for two consecutive days for week 1, then 3 mgs the next week until you are off). This works well too- I saw almost immediate results and there were no sheds after I weaned off.
The reason pulses are used is they don’t carry the same side effect profile as taking the meds every day but have a similar impact on stopping inflammation. That said steriods are not to be taken lightly- some people have few side effects - others have more serious ones. My experience with them was lucky- I saw weight gain, a bit of trouble getting to sleep on my pulse days, and sometime felt a bit out of it. Once I stopped these things went away (though weight is harder to maintain on Tofacitinib then before I used medication).
I feel from personal experience, reading studies from earlier trials and from learned knowledge from experiences of other alopecians- getting the growth started seems to be the hardest bit. Once the hair growth starts, the Tofacitinib seems to be able to continue and maintain the growth, it just struggles at the beginning to shut off the attack and allow the follicles to regenerate the hair. I think this is especially relevant if you commenced treatment in what I call an “active flare” - it’s hard to explain this - but it’s when the attack is heightened - my experience of this was burning on my scalp while the hair was falling, tremors, and weight loss. Flares are well documented in other autoimmune diseases.
It is a confusing concept, some doctors are starting to move towards the use of oral minoxidil to encourage the commencement of growth. I think they feel it’s slightly safer. Oral minoxidil also has side effects and can be problematic for some people too.
The main thing I think is important to know when starting Tofacitinib is that it can take a long time to get started. More recent trials are suggesting 6-12 months to see even vellus hairs. Indeed if you looked at earlier trials often people were called non responders if nothing was seen at 3 months- I didn’t see anything until month 5- and that was white fluff, but by month 8 full regrowth - I would’ve been a non responder in those earlier trials yet I am a great responder (full regrowth - thicker than before alopecia and stable for almost two years now). Please give this med time to work, you may not see results for 6 months but that doesn’t mean you are not a responder!
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Thanks for your input frida. It’s very comforting and makes a lot of sense. I started tofa in September. I’m just over 2 months now with a slowed down progression of my condition but hast stopped completely . I’m on 11 mg morning and 5 mg at night started and 10 initially and increased every 2 weeks. Not much belly’s hair at all and was starting to panic. But reading your comment I think you are right. I took it in the middle of a flare and I guess that’s not helping the medication to take full effect . I will wait until middle of January if no desired growth I will then consider steroid pulsing and shots in the eyebrows . Thanks again
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Like I mentioned, it took a year before I was referred to a Dr. that would help me. I had several that knew very little about the disease and prescribed topical steroids along with kenalog shots. I was, finally, referred to a specialist at UCSF(University of California San Francisco). She had Alopecia as a teenager and lost all of her hair, that is why she chose it as her specialty. She knew all about Dr. King's studies and that was the protocol she prescribed for me. Recently, I went to see my local dermatologist, the one who referred me to UCSF, and one of the other doctors was interested in what I had done to grow my hair. She had a patient she was trying to help, I told her to look up Dr. King. When I went back the next time, she told me her patient was responding to the steroid pulse. I would take the articles and evidence from Dr.King's studies into my dermatologist, if I had this to do over. In my case, my doctor was open to finding someone to help me after stringing me along for a year with pointless injections and expensive topical treatments.
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I hear you Charlie . In our cases unfortunately no one is going to help unless we persist . I remember I paid 270 sterling pounds for a dermatologist to tell me there isn’t much I can do for you ! I wish I had known about this fabulous forum a few months ago. Anyway congratulations for having your hair back ! You had a pill of 300 mg once a month? Before you started prednisone , did you have any vellus hair ?
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I started taking the Xeljanz about 1 year after losing all my hair. I got the first 3 months through pfizer and then I went to Mexico and bought another 5 months supply. At that time I was taking 10mg a day. After 5 months of no growth, not even vellus hairs, I asked my Dr. to give me the pulse of steroids. She ordered 6 (50mg) tablets (300mg) once a month for 3 months. I also, increased my dose of tofacitinib to 20mg. The hair started coming in almost immediately. I think it was vellus hairs at first but they didn't fall out and continued to get stronger. Hope this helps.
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I've been taking tofi and my hair started growing and it's all good. But I stopped for 2 weeks because u started using antibiotic and then am back to it 3 pills a day and it's been 12 days but the issue is that my hair is falling again can someone help me and tell me why this is happening
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It is because the root cause is not treated. You are suppressing your immune system which is causing your autoimmune disease (alopecia in this case). So when you remove the pill that is suppressing your immune system it goes back to the original state.
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