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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 Cocopuffz17 on
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I completely understand. Here is my perspective. I was on an antidepressant for 11 years of my life and told I would never come off it. I started having patches almost 4 years ago now. One option for me was an immunosuppressant for alopecia and that’s where I drew the line. I couldn’t handle being on another drug. So I did a lot of research and learning on the matter. I truly believe the issue lies in the gut. I changed my diet(which in turn changed my my microbiome). I was able to come off the antidepressant(which I was told numerous times I’d never come off of). My hair is growing back and all my health issues are reversing for the better.
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Cocopuffz,
What makes you believe that you actually have/had AA/AU? Did you ever have a biopsy to confirm this?
I don't want to steal your thunder, but have you ever considered that your hairloss & other issues were actually caused by Paxil withdrawl and that you never had AA/AU?
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I was diagnosed by a dermatologist.
I believe the gut issues paroxetine causes wrecked my gut microbiome. Which caused my immune system to go into overdrive and cause alopecia.
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If you were diagnosed without a biopsy, the dermatologist just guessed it was AA because that's all they can do without one.
The reality is that most antidepressants including Paxil can cause massive hair loss, including head, eyebrows and body that looks exactly like AA/AU, but it's not an autoimmune alopecia.
The hair usually (not always) grows back after the body heals from the withdrawl. How long that takes is individual and can be anywhere from months to years.
The fact that your hair regrowth is mostly still white grey several months after regrowth indicates it was caused by extreme stress to the body (Paxil withdrawl) and not auto immune alopecia.
You diet likely helped you deal with withdrawl even if by distraction. The mind is a powerful thing. Anyways, I wish you good health.
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Actually, your gut had little to do with it. The underlying issue antidepressants cause is adrenal failure and thyroid disfunction. I don't know if you ever had your DHEA tested while in withdrawl but it was probably that of a 90 year old man. Your cortisol was also likely chronically high. It eventually resolves once the body reaches homeostasis, but again that healing is a different timeframe individually.
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The gut has everything to do with it. I had my thyroid tested over 5 times and it is good.
Just curious how my hair grew back before? When I was on the drug constant, no changes. Only change was to my nutrition.
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Sorry the gut doesn't have anything to do with it in this case. I don't mean to lock horns with you but this whole "Leaky Gut" BS is just fabricated internet fantasy to sell books and supplements. It doesn't exist, as in, it's a fairy tale, albeit a money making one.
You visiting the Dr. and getting your TSH tested doesn't tell you squat about your thyroid which is what most doctors test. Even if they tested TSH, T3, T4 it's just serum levels. Antidepressants & benzodiazepines affect thyroid hormone uptake at the cellular level, which usual leaves the serum level at normal to high so a test looks perfectly normal. You can read up on that here;
https://restorativemedicine.org/journal/thyroid-hormone-transport-i...
Did you have your adrenals tested? Cortisol, ACTH, Testosterone, Free Testosterone, DHEA, etc? If so what were the results?
Sorry I don't have a fortune cookie handy to tell you why your hair regrew some when you were on a diet other than better nutrition helps the body deal with stress, and there's no denying that your body was under severe duress. I saw your pics. It looked like you had aged 10 years. AA/AU doesn't do that. You just lose hair. The good news is your premature aging does reverse as the body heals.
Again I don't mean to steal your thunder, and I certainly don't want to derail your progress. But realize that what you have and what others are dealing with here are 2 very different things. I'm glad you didn't take Xeljanz, because it wouldn't have helped, and may have even caused further stress and damage to an already damaged body. But by the same token your "magical diet" isn't going to cure anyone's AA/AU either.
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There are a lot of medications and poor diets that will cause hair loss to a degree that it looks like alopecia. That is probably the cause of your hair loss and had nothing to do with your immune system. Poor diet, combined with medications sounds more like the cause. My mother has started taking heart medication and her hair is falling out. She had more hair than most people half her age and now its very thin.
All of my hair fell out within 4 weeks, even my eyelashes and eyebrows. A biopsy revealed it was Alopecia. I went to numerous specialists, a functional doctor and a nutritionist. My functional Dr. made sure all my blood work was treated and balanced and the nutritionist put me on a strict diet. I totally believed that this would all work. I knew I would never be able to afford Xeljanz and I wanted to be healthy. I train and ride jumpers competitively, so my physical health is very important to me. I am 5'6 and typically weigh around 118. I quit all sugar, dairy, and gluten. I only drank filtered water at room temperature, no coffee, tea, alcohol, nada. I eat 4 small meals a day all included veggies, beans and protein. As boring as it was, even went on a cruise and stuck to the diet, I had promised myself I would try this for 1 year. After a year, I was still as bald as a billiard ball, not a single hair in sight and I looked anorexic. Most of the time I was an inactive member of this site and read all the stories. I finally sought out a dr. that would prescribe xeljanz and gave it a try. A year later I have a full head of hair. I eat all my favorite foods and often have a glass of wine in the evening. I don't know how I lived without coffee because I love it! Just saying, a malfunctioning immune system is like a runaway train and often leads to more than one autoimmune disease. It's very difficult to call of the attack but the medication block the it and prevents the damage. In the case of someone with Alopecia, the sooner you block that attack the sooner you minimize the damage.
One more thing, the fact your thyroid was good is even more of an indicator that you didn't have alopecia.
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Hi Cocopuffz,
I’m just curious. As you don’t seem interested in taking Xeljanz are you on this forum because you are considering it, were you previously taking it or is it just for your curiosity?
TS
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I read often and like to see how different things work for this autoimmune disease. At one point I was considering taking it.
Like I said I didn’t come here to start an argument, I just wanted to offer a different perspective.
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It’s all good man. Great to have different perspectives on the forum. I was just asking. Pleasure to meet you.
TS
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Yes, it is great to have different perspectives. Same goes to you, nice to meet you!
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