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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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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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I bought minoxidil off of ebay but it's the topical foam version. I purchased the Kirkland (Costco) brand.
What dose are you on and how long have you been on it?
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Hi All
Does anyone know of a caring and supportive Dermatologist in the UK. I am hoping to start taking Xeljanx and looking for someone to monitor my blood work etc.
Thanks in advance.
Nat
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Hi Nat,
If you have a compassionate GP, the blood tests are pretty much standard for immunosuppressant use, and many GP’s monitor the bloods of patients on methotrexate and cyclosporine- so they would be able to do the same tests on you (I think- Aussie system a bit different to UK). They need to look at liver and kidney test markers and also the basics like iron levels, white/ red blood cell count, vit d and thyroid. Also doesn’t have to be a dermatologist - an immunologist or specialist that deals with immune issues, and practice with immunosuppressant use may be more open to the idea. My local gp does my monthly bloods, and I see by immunologist every 4 months to track progress.
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