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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 TC on
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LOL! no not even a Yoga instructor :)
Like most people here, this has been a long and difficult experience for me. But at some point, you realize that no matter what medical treatment path is out there, you have to help heal yourself from the inside out first. Hair can't grow if your body isn't ready.
About 10 years ago, a female friend at work had a very bad car accident. Luckily she wasn't injured, but about 2 months later she lost most of her hair. She was completely devastated. After about a year her hair hadn't grown back and she fell into a deep depression and eventually left work. She isolated herself, barely ate, and let her health deteriorate. I spent a lot of time with her, made her laugh, and found creative ways to make her to eat until she started gaining some weight. Then we started running and exercising together. All her hair grew back about 7 months later. Today she's healthy, happily married with 2 kids, a great career, and incredibly happy with her life. All this to say, if she had given up 10 years ago she would've missed out on all the wonderful things in life she's enjoying now :)
Back then I didn't know what she was had gone through first hand, until it happened to me. I was in a really dark place when I first came here. But there's so many wonderful people here all sharing their knowledge and support and now you're part of us. Someday you'll be helping someone new get through this and paying it forward, and that's rewarding and healing in itself. So I do this purely for selfish reasons :)
Ok, back to your health. As much we adore our hair, the body doesn't consider hair essential. When it becomes severely stressed, it goes into protection mode and starts shutting down non-essential things, unfortunately like hair. Your body is trying to tell you that it needs you to make some changes. You need to listen and be your own best friend.
Eating and exercise is a great place to start. Your body needs fuel and then it needs exercise to use that fuel and start repairing itself. So eat healthy foods, lots of fruits, vegetables, meat proteins.
It's a good idea to see an internist dr. and get a complete blood test, including thyroid, vitamins, minerals, iron, ferritin etc. It'll help you rule out any other causes, and give you a baseline to know where you started from and have another one in 6 months.
I don't think you need rogaine or any other meds for now. It sounds like you've been through some difficult times and your body just needs to heal. So help it get there. You got this!:) Your hair will all come back and all this will make you stronger. You already took the first courageous step yesterday and you've got a bunch of new friend here, all of this happened within the past few days! Imagine what you can accomplish in a few months if you set your mind to it.
Go for walks, listen to music, clear your mind, eat, breathe deeply, relax and don't forget to smile a lot :) It does incredible things to help the mind and body heal.
xo
TC
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Permalink Reply by Sad_Rapunzel on
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Thank you
but I really don't believe in these good stories of some womens, who after all struggling got that all... i think all of them just made up for people like me to have faith...
In this topic some person replied to me that cutting dairy helped to his hair loss and just like 3-5 days ago i started to add little bit cottage cheese/cheese to my meals... And now I'm afraid I did that and considering to cut it out again... What will be the best for me? I don't know. And I've seen a lot of doctors, dear Friend... And they all have different advices - just like here. Some gynecologists sure I should return dairy products and do not have any restrictions at all, other - tell me I should stay on my diet. I'm really lack of self confidence and felt guilty my entire life, I felt like most unatractive person in the room all the time. This is why loosing hair is such a painful experience. And this is my EVERY comment in this topic affect my every decision... :(
P.S. I am really grateful to you for you replies and for you empathy! I'm sending you hugest hug and cry a lil' bit on your shoulder :(
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That's totally fine, everyone has to find their own way. Took me years before I discovered ferritin levels could make a difference for me. But I talked to everyone, tried everything that wasn't dangerous and finally found what worked for me. Thats all I'm suggesting, you have to search for your triggers. I know EXACTLY how you feel and it breaks my heart. But being proactive helps, keep gathering and discovering at your own pace. Kathy
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Courageous Rapunzel :)
I totally get how you're feeling and why you're cynical. Remember that most of us here are going through the same issues and feelings so we're all in this together.
What I told you about my friend is completely and totally a true story. You don't have to believe it, but just take a minute and think. You've been trying things your way for 2 years, and how's that been working out for you? So why not give this a chance? :) What do you have to lose? Either all your hair will come back and grow or not. Deep down inside you know it will, so just do like the running shoes and Just Do it! LOL :)
Each person's physiology and health issues are different. People with auto-immune issues, often see some improvement avoiding inflammatory foods like gluten, dairy etc. But I don't think your hair loss is auto-immune related so eliminating dairy is unlikely to make any difference unless it causes you issues, pain, bloating, gas. Listen to your body. Eat healthy, unprocessed foods, fruits, veggies, clean meats. Take a good probiotic every day. This will help not only your body but your mind as well. It helps produce and balance GABA, which calms the mind and minimize stress. Get a good quality protein powder (whey isolate or vegetable protein), and some berries, banana or whatever u enjoy the taste of and drink one ever day. Within a month you'll notice a huge difference of how good your body feels. Getting the hair back can feel like slow a process, but you're going to be fine :)
When you get back to NYC, go see a good internist and have a complete blood test. The doctors at Columbia are great so consider setting up an appointment there.
P.S. Sending you hugest hugs back :) Don't be afraid or sad anymore. It's all temporary. All of us are always here for you, and we're glad you decided to come here to share your story.
Stay courageous!
xo
TC
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I calmed down for one week after your messages... But today I looked carefully at my head again... I have no hope
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I am beyond happy that this has been such a positive response to the meds! It takes time, patience and a lot of brainstorming to get a result but I think it’s totally worth it! And yes, healthy living helps too, especially in countering any negatives from taking the meds. I still love coffee and chocolate but am trying to learn how to read myself better, stress less and chillax. Some stress is unavoidable but I trying to get myself to respond in a calm and measured way now as opposed to letting myself get worked up. Loosing your hair and feeling so unhealthy mentally makes you realise that some dramas are small bumps in life and the focus should be on health and love and empathy. Love that this forum is reaching people who are seeking solutions!
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But don't you ever think why this had happened to you? Why nobody from your surrounding has somebody like this? Don't you ever think: "God, WHY?"
Don't you know somebody who much much more worse then you are? Somebody, who is really sinful and somebody who you might expect have this kind of punishment from Destiny.
This is so unfair, guys. SO Un-Fair. It's SO hard to believe in God when you have so many health issues, and not simple ones, but ones that make you anti social.
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Permalink Reply by serg navaro on
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I’ve asked all the same questions, it’s tough dealing with Alopecia, I started losing my hair when I was 13 years old and dealt with all kinds of bullying and suffered all the hardships growing up. I’m 29 now and still not open about it but I’ve accepted it and I’m still hopeful that a true treatment is in the near future. I’ve tried all kinds of “treatments” but it’s never permanent so I decided to stop xeljanz 6 months ago and just wait for an actual treatment for Alopecia to come out. Reading articles like the one below definitely get my hopes up.
https://magazine.columbia.edu/article/radical-solutions-baldness
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go see a psychiatrist, I do not understand your photos you have a slight sparse loss? because I do not see any hole there is plenty of people here who would like this slight loss
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You are not right.
I have left with 1/6 of what I have got before.
Or you think I should come here. when I will have no hair at all?
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for the moment you do not do anything, because you only have sparse hair so no hole, because using a drug you can worsen the fall.
no doctor will prescribe xeljanz or a powerful medicine.
you do not even know if your fall will stop.
I was not correct because you have almost no loss and you think to use a powerful drug like xeljanz or methotrexate.
you do not even know how it's going to evolve if you really see his continuous dropped the worst considering there are several kinds of alopecia
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So what do I need to do now?
If this dug is too powerful for me, so what is left? WHat to do with this awful thinning? It is noticeable. People asking, people see this difference. I don't meet with people who knew me before...
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