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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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Replies to This Discussion
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Permalink Reply by Frida Rupert on
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Great advice TC. I think that you, SR, probably don’t have autoimmune hair loss either, but I know any hair loss is traumatic. The benefits of non autoimmune hairloss is that once you recover the chance of you having to deal with this again is very low, whereas autoimmune hairloss is a life long condition to be managed.
I think some counselling would be so helpful to you to get through the next 6 months to a year, even if you use a call up service. You have mentioned that you have a low self esteem, and counselling could help with viewing yourself more positively, while also treating a possible eating disorder. From your input in this forum it’s clear you are someone who is intelligent, funny, and I have no doubt much more attractive then you feel. Regardless - there is much more value in you than your looks. And, frankly, if having a boyfriend is dependent on your hair then the boyfriend isn’t worth your time. Many men place value on other things about you - that your funny and kind and can talk intelligently about various subjects - and don’t solely judge us on our hair or how skinny we are. I think most would find you very attractive anyway. So please don’t see this as the end of the road, indeed this might be the motivation to make a really positive change in diet and how you view yourself. When life gives us such a rough path often the best way to handle it is to be kind to ourselves.
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Permalink Reply by Sad_Rapunzel on
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Hello
Thank you fro your reply
Well, I stopped them slowly dicreasing the dose(as I remember) and it was last year in the summer (I think).
About Dr.Bordone - it's not correct. I didn't feel anything :) I still haven't heard her feedback about my blood tests, and I've been calling to the office since last week :)
So I don't have any conclusions about her yet, but this silence is really strange for me.
And you see - she also could not tell from my first visit if I have alopecia or not because she hadn't seen my blood results on that matter yet. Isn't it the main point of that specific blood test is it really AU or not?
SO I'm in now way angry or dissapointed with her, I'm just confused with no advices and no new information from our consultation, and upset with this silence afterwords.You need to get your health and mind right so you can start to heal. That means eating normally and healthy. The body doesn't consider hair essential, when you starve it, it shuts down hair to conserve energy for more vital functions. Don't eat like a bird or a mouse, you're a person. Would you rather be skinny with less hair, or a little more shapely with a full head of healthy hair? Your choice.
Don't you think that for two years I haven't tried everything? Changing diet, changing activity, on HRT and without it. My blood tests normal. My hormones are low, and I have my period only with a HRT pill, which is not healed hormonal system, and all doctors I've seen for this period prescribed either HRT or birth control pills. And I do not want to take it anymore actually. I'm on Femoston now, and it mess with my mood, digestion, water retention,etc and all I have - is cosmetic effects, not my real ovarian produced those, so I need to take care of that too.
And everybody lives in stress, don't you think?
And everybody follows some diet. SO why it's happened to me? And if I'm eating enough now, wasn't my new hair supposed to grow as thick as it was before? So I don't know what th h*ll is happening to me and those dermatologist's calmly clap on the shoulder and "it will heal itself...someday...in future" - isn't working for me. Because it's not a reply. It's not a healing process. It's "Well, actually, we don't know. And don't know what you should do. And don't know will it be thick and full again, or you will stay that way and it will be even worse when you will get pregnent. also, you'll be almost bald in you menopause".
Ah, yes, and most commercial dermatologists will happily prescribe you minoxidil or ragaine. 'cause why not? let put her on medication which gives even more hair loss and then make her dependent for the rest of her life.I'm sorry my dear TC for all I write here, it's just hurt so much and when I talk to you or Frida I feel like I talk to understanding and very knowledgeable person, not a wall, like in most cases...
So I value you both so highly and hope my poor english will not cost any misunderstadning and you will not leave me :) ever :D
Just remember, this is just a passing phase in your life. Your hair will grow back and soon as you let it. It may take 6 months to year from when you truly start, but only you can decided when and if that happens...You should understand this is the hardest part, right?
This phase forever will by my 20s. Most juicy period of life (as everybody says, i'll never know).
The most exciting age, the most IMPORTANT AGE, because if you not sponge every skill knowledge, everything that life give you in this period - you will never build strong fundament for a succefull, fanancially stable rest of your life. And this is what scares me and put in everyday suffering, stress. I am missing things, I am missing everything in life. And I will NEVER have a chance to relive these years. I don't understand why I was put in this by God or any other powers and what for, I feel like Job my every day! And hair it's a last drop for me. Frida wrote that my hair is not who I am and there is more, etc, but how will you attract anybody? We are this way.. Guys are this way. They want beautyfull, skin, cool girl with healthy full hair and amazing full life. And right now and next year I will be neither of those things.I will try multivitamin, but it's a looooong shoot.
And no need in biotin - I already eat a lot of eggs, so there no deficiency in that supplement.
I thought you knew some woodoo treatment - something to rub in head, or some electrical comb, or shots in the head, or acupuncture. I don't know, anything to feel you're actually put some effort in thickening your hair and not just wait for it to heal itself, what I'm doing all these two years....
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From your post in your other thread, you mentioned Dr. Bordone told you it was TE, so I'm somewhat confused. There isn't a specific blood test to diagnose auto-immune alopecia (AA/AU/AT).
You've been on antidepressants that can cause hair loss (TE), hormonal issues and anorexia, both of which can cause hair loss and amenorrhea. So why would you ignore all this and believe you have an auto-immune alopecia?
If it looks like a duck, quacks like a duck, walks like a duck, ...it's probably not a chicken :)
If you stopped your antidepressants only sometime just last summer, it can a while (6-18 months) for your body to even begin to normalize itself. Withdrawl is really difficult and stressful on your body. It will heal, but it takes time.
As for diet. It's great that you're making the effort, but from what I remember all you did was start eating a little bit of cottage cheese. You need to eat at least 3 healthy full meals a day, or if you prefer 5-6 smaller meals. Eggs don't have nearly enough biotin in them to resolve these kind of hair issues so I still suggest to discuss 5000mcg supplement with your doc.
Frida's suggestion for counselling is also something you should really consider. Sometimes when we fall, we need some help to get back up, and that's ok and nothing to be ashamed of. What matters is the result.
In my humble opinion, a dermatologist isn't the right direction for now. I suggested an Internal Medicine Dr. because I really think you need to get a good handle on your overall health, hormones, and blood work. They're trained to look at your overall health, and help diagnose what if any issues and get you back into a healthy state. That's what you need right now.
Yes, we all have stress in our lives. But when we become consumed with it 24/7, it drastically affects our health. You must find what things soothe you to minimize that stress as much as you can. Anxiety, depression, stress will only make your hair situation worse.
Look I've been on Xeljanz for 5 months and my situation is only gotten worse. As I type this I've had a few hairs and eyebrows fall into my face. It's devastating, so I do feel what you're going through first hand. You're not alone. I do care, and wish you nothing but the best. But you have to stop fighting things and be a better friend to yourself.
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Hi Rapunzel,
I found a site for women run by women who have or had amenhorea and hair loss that you might want to check out.
They also have a facebook support group so you can chat with women going through similar issues.
Remember...stay courageous :)
xo
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Hey guys I am in a dilemma and need some help
My dermatologist gave me a prescription and I was able to get Xeljanz straight from India pharmacy from Pfizer. Not the generic, but actual Xeljanz. I got a 3 month supply from a friend who brought it over.
I got 3 months supply to buy time so I can try to get some through the Pfizer assistance program for a more affordable price.
I got my rejection letter from my insurance and now they want 2 articles from my derm showing its efficacy and safety. My derm says that if I am already egtting medication they will hold off on the Pfizer program. I currently have the medication but my to pay 600-1000 USD per month is too much. Should I lie to them and say I do not have the medication? Do you guys think they can check that I have actually used the prescription in India? If they catch me lying it wont really matter since it seems like they aren't going to help me anyways for some reason. Or should I tell them that I have the medication, but I can not afford to pay for much longer. Maybe this way they will actually work with me.
Any advice would be appreciated
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https://www.ncbi.nlm.nih.gov/m/pubmed/26578790/
After the embolism study thought this study might cheer us all up- Jak inhibitors show some signs of slowing the aging process and reducing fragility in old age... two sides to every coin!!!
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My cystic acne has been getting better but at times has flares. My doctor wants me to go on a few months of accutane .
I feel am a bit uncomfortable going in accutane with xeljanz .any input?
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Would not take both of those drugs together.Accutane is a super powerful drug.When my daughter had a acne flair up in her teens her doctor refused to give it to her.
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Has anyone found that their re-growth was not totally linear? I started on 10 mg per day about 6 weeks ago and I noticed significant growth in the first 2-3 weeks but the havent noticed any change in the last 2-3 weeks. Am I being impatient or would it make sense to eventually increase the dose?
I'm on the generic Tofacitinib from Bangladesh.
I've also added minoxidil to my regimen. Has that made any difference for anyone who was also on xeljanz?
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My progress was also not linear indeed. It was kind of in bursts sometimes.
I am also taking Minoxidil 5mg over the last 4 months. It seems to help a bit.
Where do you buy Minoxidil btw? I live in Europe but it's not available there. So I am getting it from USA when I visit.
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