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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 Carlie on
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Hi Anna, I'm so sorry to hear this. It's agonizing, looking in the mirror 5000 times a day angling it just so the light might give you a better view of the tiny fine hairs, if there are any. It's so painful, day in and day out. It takes over our lives to a certain extent and all we want is to feel normal again. I've heard that non responders often respond after going off the meds and starting them again. How's your diet? Maybe there's something you are eating or drinking that is hindering the progress.
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Hi friends, people who are taking 20 mg, could you tell me how I should take it? I mean morning 2 and evening 2 or morning 2 / 1 in afternoon and 1 in the evening? Thanks in advance!
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Shad- I take two in am and two inpm as I find it gets cuddly if I have to take meds out with me when I go to work or run errands. So far so good. I think as long as you take a reasonably equal dose twice a day it will be fine. How is your progress going?
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Thanks for the answer Frida, I’m going to start 20 mg , I’m in 5 months now and blonde hair and some thin black hair infront, I think it’s slow but it’s growing. I’m going dr, next week, I’ll ask if I can add prednisone as well. Thanks
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Hi Frida,
will you please tell me how to find your email so that I may friend you. I am having trouble trying to navigate this website.
it seems so very disorganized!
Thanks,
Bubbles
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Anna - when do you go see doctor king? I’m hoping he can shed some light on pathways for you. Either through finding a co- therapy that works or via a new med. I think i remember you saying that cyclosporine (or was it methotrexate?) was a little bit successful in your nails. Maybe that as a co-therapy might have an impact. Also he may have the ability to get you on a trial for a new med(so it’s affordable). I’m going to try and see what the cost of Ruxo is overseas. Also the Jak 1 inhibitor that’s approved for vets maybe something that trials are happening on for humans. Whatever you do don’t give up hope. Something out there will work- we just need to figure out logistics. The stop and restart method may work too- I know you probably do - but sometimes anti inflammatory supplements may help. I think some of the best are curcumin, berberine, magnesium, kalawalla. I took berberine for about 3 months when hair was regrowing, and am now on kalawalla and curcumin. Diet and supplements I think are only 5% helpful but that maybe enough to start things happening. I know this is hard but we will keep looking and we will get there.
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Hi Anna - was just reading through some comments and came across yours. What form of alopecia do you have? I was speaking with my doctor recently at Columbia University in NYC and she told me they have started and or will be starting some new trials for drugs other than xeljanz that have been having good results. Not sure if you are located near NY but there are trials looking for participants.
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Hi New jack, I do think it’s a bit odd but I think we are now hyper aware of what’s happening with our scalp. Since I’ve been on xeljanz I get these pimples on my head- if I use an antibacterial soap they go away but then reappear - I’m not sure if I got them before cause I never really touched my scalp whereasnow I’m constantly touching it to make sure it’s still there and also just a nervous tick I’ve developed. Have you asked your doc about it? Lots of people seem to feel a burning sensation when the hair falls but your hair isn’t falling. It’s really unhelpful for the anxiety factor which is already ramped up from the trauma of what we’ve gone through. I hope your doc can help you find a solution...
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Hey Frida,
I don't see my doctor for another couple weeks I will ask her what she thinks. The odd sensations I'm getting are weird they come and go I'm wondering if it's from me buzzing my hair and I'm getting hair needless stuck around by body because that's when it seems to be the worse and the uncomfortableness seems to go away a few days later.
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Frida, could you please explain what pulsing steroids is, again? I want to talk to my doctor about it, I feel like I'm at a standstill.
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Hi Carlie - sorry for late reply. The pulsing is down three different ways. My way which I found successful and economical was using a very strong oral steriod (betamethasone) 2 consecutive days of the week. This way you can limit the nasty side effects and it still gives you most of the benefits. These steriods need to have a longer half life so betamethasone and dexamethasone are the two I can think off the top of my head - I took 5 mgs of oral betamethasone.
If you can get it on insurance or can afford it - the second method is to IV a strong dose of predlisone via IV. This requires a doctor and equipment to administer. I got quoted a grand a pop so I went with method 1- the logistics with getting childcare and having to go to a hospital far away made it logistically difficult too.
The third method which was tried on me at the beginning was to take daily prednisone for 6 weeks starting at a high dose and then tapering down- this is the method most doctors use but personally and in trials I found it to be the least effective. With methods 11 and 3 tapering off needs to be done to avoid adrenaline shock so you need to stay on an established dose and then slowly work down once you feel you are ready to go off- ie - no cold turkey. The IV method I don’t think required a taper.
I hope this helps! It certainly got things going for me.
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