Alopecia World
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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 Football fan on
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So happy for you!
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Thank you Football fan. I know tofa has been a bit disappointing for you. I think in the next year options will open up for all those who don’t respond quite as well to tofa and I have everything crossed that soon we’ll be celebrating full regrowth for you xx
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Thanks New Jack - not quite as hairy as you but a great result thanks to tofa!
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Permalink Reply by Sad_Rapunzel on
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Well.. This is just unfair...
Dr. Bordone told me she sees no point for me to start Xeljanz and I should just wait... SO my bold spots might be or MIGHT NOT regrow again. And not in 2,3,4 months, but in 1 or 2 f*cking years...
Frida, you're magnificent! Very model type of face. And I know what I'm talking about, you should definitely try.
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Then you should either try another Dr or use the time to investigate other avenues. Track your ferritin levels, stop dairy products, use a good quality probiotic. As I've written before, Dr Yaker in Texas has a better version of Rogaine that has helped my hair; not entirely but MUCH better than before. This is not a punishment from God, its a hurdle you need to try to conquer. It won't be your last and I'm guessing its not your first. You can do this!
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Stopping dairy products was a start point for all my issues at the first place...
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https://www.vitals.com/doctors/Dr_Nathan_Yaker.html
Are you talking about this doctor?
Do you think it will be possible to have a video consultation with him?
If you still seeing him, could you please ask for me? :(
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Yes, you can Skype your first appointment. It's Dr David Yaker 972-468-8301. The original formula is 82F, he just improved the formula and I'm not sure if they changed the name. He will explain it does not cure alopecia but I've found its a superior product to Rogaine for helping hair to grow back and gentler on my scalp. I've been using it for about 1 1/2 years. And can't stress enough the importance of tracking your ferritin. Its a simple blood test your DR can order. Start doing it 2-3 times a year. Ferritin shows how much iron is in your blood steam and has a huge range for "normal". But I was on the very low end and as I brought myself up to around the 90's I have had a noticeable improvement in my hair. Its impossible to know exactly what works but if you keep a log of everything you try, you may just find a combination that helps. And add the probiotic, these are the 3 things I have found helped me most, and I've tried just about EVERYTHING! Kathy
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Thank you a lot, dear Kathy...
I'd love to chat without you somewhere else, if you are open to it...
My ferritin is normal, and everything else is normal as well, except my female hormones, which is understandably having my amenorrhea in mind.
I see new hair growth, but it's so weak and those baby hairs don't cover my hairline, so it's already been impossible mission for me to make pony tale ;(
and, as I know, even almost bald females have that "hair growth", but it's never make it to thick hair...
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I'm sure I am a lot older than you and I struggled finding answers for 15+ years. My loss was not enough for Xeljanz according to my DR or the pending drugs that are in trial now but I was definitely at 40-50% loss on & and off for many years. So if you are like me; many recurring large bald spots all over my head that took years to start growing back; it was like "whack a mole", then you may as well try other avenues to pursue some success. At this point there is not a cure. But if they don't want you on that drug, you need to explore other avenues in the meanwhile. I am doing pretty awesome right now, better than ever before. I am lucky I never lost my eyebrows or eyelashes and my previously great but stick straight hair is now soft & curly and quite thick. I don't have to wear any of my extensions right now but I use L'oreal Magic Root to cover spots that sparse. Curls cover up a lot! But who knows what the future holds. I am doing everything I can for my body now and I'm guessing you are in the same place. And as I stated earlier, ferritin has a big range ( anywhere from 20-288 ng/mL) is considered "normal" so explore that further before discounting. But I don't know anything about amenorrhea or how that affects this condition so I can't speak to that. kbcod2@yahoo.com
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thank you sad_rapunzel, I’m 36 and a goof so think a modeling career is out of the picture.... but a lovely compliment.
Did Dr Bordone say why she didn’t think Tofacitinib was for you? Is it because she is unsure it is Alopecia Areata or is it because she doesn’t think the AA is severe enough to warrant aggressive treatment? Did she do a pull test? I am surprised as from all accounts she is a great doctor and more confident in prescribing Tofacitinib than most.
Just wondering if you have had all your hormones checked? To me the loss of period is a sign that something is seriously amiss. And hormones play a huge role in hair growth. Many doctors don’t run the full range of blood tests to check for hormonal issues. I know you are sick of going to doctors but there maybe a very simple solution to your hair loss if it is not autoimmune. I know it’s a really tough situation but you are very young (I know this sounds condescending- and I’m sorry I can’t articulate it better) and your whole life is in front of you. Once you sort out what is causing the hair loss and get appropriate treatment you have many many years of living where you can feel like yourself again. This is a hard mountain to climb, but keep going, you will get over this hump and can look forward to great relationships, family, adventures etc. This is not the end at all, just a shitty detour.
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