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 Frida Rupert on
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Hi Sad Rapunzel,
steriods definitely need to be carefully managed to avoid long term health issues. Weight gain happens but often can be resolved when you stop- the thing with steriods is management either through only using for a short time or doing a pulse method for slightly longer periods. Having said that - I put on weight with meds but not a huge amount and frankly 5 pounds heavier with a head full of hair is alright in my mind. Options like methotrexate and cyclosporine can be effective and less likely to put on weight but can be hard on the body. Methotrexate can cause nausea, and cyclosporine can cause shakes amongst other things. Again, both, I would think, would only be temporary measure to try and push your body into remission - cyclosporine usually is only recommended for 12 months as it is hard on the kidneys, from the sounds of it you still have some hair... so there is every chance natural remission could happen without meds. Many cases of less than 50% loss of scalp hair resolve in 12 - 18 months, though you may have another episode later in life as it is a condition which has flares and remissions.
As Nat mentioned often local prices for meds are different across different countries. For a 10mg dose a day is $1300 Australian dollars here, in the States it is around twice that (taking into account currency), however turkey, and India have cheaper prices for the Pfizer branded xeljanz which maybe similar to the price charged in the Ukraine. Jak inhibitors are probably the best and most gentle method for your body as they don’t target your entire immune system. Side effects happen, for me- weight gain and acne which resolved after a few months.
i just want to assure you that this is not a hopeless situation. Please don’t think that. Alopecia is tough but many of us on this thread have lived through it and with it, some for years, and have found ways to cope and also successful treatments.
Dr King has been a doctor that has shown an interest in this area and is compassionate towards those who suffer from it as far as can tell from those on this thread who have seen him personally. This is a rarity in the medical world, some have compassion but no knowledge, some have knowledge and no compassion, and many have neither compassion nor knowledge so any doctor who listens, attempts to grasp onto new information and knowledge, and is willing to be compassionate in their approach gets an A+ in my book.
If it is not alopecia it maybe related to your thyroid, particularly if you have been missing your period. Also, and forgive me if this is wrong - but you seem worried about your weight, and with no period it maybe something nutrition based. Both thyroid and many nutritional deficiencies can be tested via a simple blood test that any doctor can prescribe and interpret (or you just take the results and look into it yourself) - this maybe the issue if it is TE, as both thyroid and undereating can have an impact on hair growth.
Let us us know how you go - this thread is full of knowledge, experience and empathy.
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Permalink Reply by Sad_Rapunzel on
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I a, so happy I found you, guys.
Thank you so much for your reply. Thank you for finding time to response to me with such patience!
You are right. I had anorexia nervosa, but without anorexic habits. I just restrict all high GL products, and eat only clean products with no salt, no gluten, no sugar, no dairy(which I adored a lot), which lead me to underweight and ammenorrhea. Probably, to hair loss too. I cut dairy, move to NY, had a very stressful betrayal from BF and start to loose hair. Then, in one month, lose my period.
And now it's been two years. I can't look in the mirror.
I bought Minoxidil, but can't start it. I don't believe in it. I afraid first two months, when you supposed to have more loss of hair. I afraid of idea to put all your hair in one follicle cycle. This makes you prisoner of product, because once you've stopper - they fill fell out all together.
I still have hope I will find some magical doctor, who calm me down and tell me I am able to reverse it, I am able to have 100% regrowth and even more. Do you remember old movie Ella Enchanted? I wish to have a cure like she had, with extra hair growth, remember? My one and only dream...
You are right, we do have Xeljanz here, but I am not sure it's normal quality, it's legal, and that I am able to start it without doctor's advice, because Hyperlipidemia is one of side effect to this medicine, and I already have it. BTW, this is another Sh*T that happening to me - maybe it's related to ammenorrhea, or I don't know. I'm freakin' subject or a research... Or I was born to this world just for people to look at me, hear my story about ALL MY DISEASES and think:" Geeeez, turns out my life isn't that bad...poor girl..."
Sorry again. And sorry for my English.
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Permalink Reply by AnakinWildstar69 on
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again, "John Bergman-Autoimmunity-2018"..youtube video. enjoy =D
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Hi, we are in a point in time in which we do not understand a lot of diseases and we call them auto-immune. In our own lifetime it's probable that treating the source of alopecia would not be found. Yet, JAK inhibitors have given the opportunity to treat a bit closer to the source and have helped a lot of people - a few of them in this forum and this thread specifically.
As for Dr. King and the support he gets, I am telling you he deserves it. He is a compassionate person that does care to help you heal. I have been to many different doctors and the difference is astonishing.
I started seeing him 5 months after I started getting Xeljanz on my own. The decision to take Xeljanz was driven by this specific thread, in which people are really trying to help each other.
Hang in there, and as Frida said, there are indeed other options which have been on the market as medicine for a while and thus they are much cheaper.
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It seems like it's taking forever but I now have about 2 inches of growth on top and about an inch on the sides and very thick, curly and silver. It started with very, almost translucent vellus hairs. I saw my UCSF Dr. who studies Dr.King because she had alopecia, and she was amazed at the growth. She showed me the pictures from November and I couldn't believe how little hair I had at that time. I remember thinking how great it was growing. I guess from bald to having a fine layer seems magnificent and at the time I felt very encouraged.I am so grateful for this group and all the painful sharing, and you Frida for sticking around. I feel guilty when I don't respond to the questions but I always see you find the time. I will try to do better. My advice to everyone is to learn as much about your body as you can. Ask questions, don't accept an answer like "your a little high or a little low but it's within the range so don't worry". It all matters and there's wonderful supplements on Amazon or were ever that will help you get there.
The medical industry is all about treating the symptoms, seldom focusing on the source of the problem or a cure. If i had listened to one of my doctors, I would still be taking kenalog shots every 3 months, with not results. I feel that I am healthier now more than ever because this disease has made me pay attention. I'm not saying become a fantic, but consider that your body may be reacting to years of poor diet, lack of exercise and unnecessary stress. Once an immune disease is triggered it's difficult to untrigger it. But let's try to imagine that while the xeljanz is working, you are healing your body and just maybe by the time you wean yourself off the medication the army that was attaching your body has been asleep for so long that they have forgotten what they were supposed to be attaching. That's my logical philosophy and I hope it works that way. I still love a glass of wine, and my coffee in the morning but I have learned to cut way back and I've added many new supplements to my diet.
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hi, great that it started to work. I am using Tofacitinib for 2 years now and literally gave me my smile on my life back and through this whole process made a better and more accepting person.
Tofacitinib doesn't treat the source. It stops the signal to attack the hair follicles. They found it by accident and still they are trying to understand how the whole system works. We are far from understanding how our body fully works.
As for supplements, as a person that took too much of them, be careful. They are totally unregulated and the harm they can do, could really outweigh the benefits.
Paying attention to have a diet full of variety of foods and having exercise are benefiting your health for sure.
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Thank you for sharing...
What supplements do you take?
I actually cried a little while read your comment.
It is so hard, and so unfair. I have so many health issues, and on top of that - this awful hair loss, which, I don't know why, I didn't care about until last summer. I had so much hair I actually couldn't tell for a long time that I'm loosing it. And know, this poor see-through hair is my hugest embarrassment. I have never like myself and my hair was the only thing I felt confident about. So now... It's like I'm always naked. It's like I'm the most unattractive girl in any group. And I was a model few years ago, I did commercial for hair product...
My insurance didn't cover Dr.Bruder, but I was advises that he's the best in industry so I gave him all my savings and.... he didn't say at least ONE useful thing. He just keep pushing me to biopsy, which I panic-ally afraid to do, because read a lot of researches where stated that biopsy is not needed for most cases.
I don't have alopecia, I don't know what I have.
I lost my periods 2 years ago and the same time start loosing hair, so it might be TE. But all good endocrinologists I could find ask for first consultation at least 750$, which is way to high...
So sorry to all for ruining your mood with my sad stories...
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Don't be sorry. You're among friends here. We're all going through the same things. It causes a lot of emotions, especially sadness. Just know you're not alone here and you never will be as long as you're willing to let us in. This forum is full of the most amazing kind hearted people, all here to help each other. While doctors are useful for some things, most of them don't really know much other than conventional options that don't do much, although there's a few exceptions out there. You'll soon learn that many of the people here are much more informed of what works and what doesn't based on their first hand experience.
You mentioned that you don't think you have alopecia. What makes you think that?
What medications are you on or have been on?
No matter what, don't give up on yourself. We'll get through this together! We're all here for you and each other.
I've been on Xeljanz for a little over 3.5 months and I see no improvement at all. In fact I've lost so much more that I'm totally bummed out. But this site and the fantastic people in it keep me going. I keep training hard because that keeps my mind balanced. You need to find what balances your mind (yoga, meditation, a pet, exercise, music...) to get you through this. Your hair will come back! In the meantime hang around here, post as often as you like :)
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Thank you so much, dear TC.
I amazed how open-heart and kind you are. And you see right through me - you just writing all my thoughts. And all my fears.
You've been on Xeljanz and have no results, so it's not a magical pill, which is really my last hope.
I'm not sure I have alopecia areata, because I have amenorrhea and have hair on body and face. I can see new hair growth, but it's too weak and to thin. I had really heavy locks, very thick long hair, just two years ago, and now I can see through my scalp.
I try to think less and cry less, but so far it's been only one day..
I will enclose before/after photo, which are really hard to see for me... And my biggest fear is minoxidil. i can't deal with more hair loss. I want something magical. I want some pill that give me extra growth, with hair follicle really close to each other. Like... Hard to brush hair. Oh.... Even if on some point I will reverse my balding (which I doubt happen), could you imagine how long it will take to grow hair back for visible volume?...
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Hi Rapunzel (notice I left out the sad) :)
Thank you for sharing your pics. I know and understand how hard it was for you to post your pics, but consider it a first courageous step to healing...step by step. So now you have change to change your nickname to Courageous Rapunzel. See how quickly things can change for the better? LOL :)
It's impossible to say for certain from the pics because there's a lot of hair covering the scalp, but your loss looks more like TE (telogen effluvium), which if it is, is a good thing. It grows back fully once the underlying cause is corrected.
You mentioned you have amenorrhea. One of the common symptoms is hair loss. The typical underlying causes of amenorrhea is:
early pregnancy - I'm guessing you're not
some birth control pills - just fyi
certain medications - have you been on any meds in the last 1-2 years?
severe stress or trauma - you mentioned you had a bad breakup with a BF
eating disorders, anorexia & low body weight - you mentioned you had some issues with this.
So my gut tells me that your hunch is right that you likely don't have alopecia (of the auto-immune kind). The good news is that your hair can and will grow back completely without any "magic" pills. Actually you yourself are that magic pill. But you have some work to do to heal your mind and body and it will take some time maybe 6 months to a year but it's within your reach! :)
xo
TC
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You are so amazing...
Are you a doctor? Or a psychotherapist? Or at least yoga instructor? :) Because I feel warm and care from every word you wrote me. And you know just what to say and how to say.
Really consider leading some healing group - you've got talent for sure for this!
I hope you are right. But as I said before, I am loosing my hair for 2 years, but same time I didn't gain any weight until recently, so that might be the real reason.
I don't want to start Hormonal Replacement therapy again, because in long-term it doesn't helpful.
But I still feel like I need to do something for my hair:take pills, supplements, prp(which doesn't have any evidence to be helpful), something!
This is why I want to start Xeljanz.
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