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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 katiegirl on
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Very happy for you! Glad to see the xeljanz is working so well for you. It gives everyone hope. Yay :)
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I am thrilled to see so much success here. I'm 30, and for the last eight years my hair has gone through vicious cycles of loss and regrowth, with my poor heart going from hopeful to hopeless over and over. But now, I have hope again!!! I had my second child in March, and like my first pregnancy, my AA went into remission. I have almost full regrowth now, four months pp, but eight months after my first child was born my hair loss came back with a vengeance and the wig had to go back on. Like many of you, I have prayed for something that would help, and xeljanz appears to be the light at the end of this gloomy tunnel! I also have psoriasis and psoriatic arthritis, neither of which are fda approved diagnoses to receive xeljanz and have it be covered, but recently I was researching xeljanz trials and discovered there is a pdufa date for this October for it's use for treating psoriasis. I happy cried. To have something that appears to be the answer to my problems and have it be out of my reach financially has been a drag to say the least. Now, I am counting the days until October. If it is approved, and this hair grows full and luscious like it once did, I will headbang it all about, run through a meadow with it flowing behind me, swoosh it over my kids to make them laugh, rough-house with them without worrying about the wig slipping, I will go swimming and ride roller coasters, I will grow it to the dang floor if I can. I just hope the growth continues until I can start xeljanz, so I'm not in a fallout period beforehand. Anyway, I wish everyone here the best of luck, happiness, health, and luscious locks! Will do before and after shots if I do get the xeljanz.
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Good Morning Everyone,
Just a quick update on my daughter. We met with Dr. King mid June and started Xeljanz. She had terrible headaches and we cut back to just one pill a day. Last week we upped the dosage to 2 pills.
Update:
Her one eyebrow is almost completely back and the other is 50% and growing. New patches and strong hair growth throughout her head. There are still some stubborn patches but even those are growing light vellus hairs. Keep in mind, she was on methotrexate which is an immune suppressor (started November 2014)...so she was already in growth mode but nothing like the last month plus.
For the first time in over 2 years we have hope and her progress is nothing short of a miracle. We are traveling back to Middlebury in August for a follow up with Dr. King.
Thank you all for sharing your heartfelt stories...it helps in those moments of darkness.
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Seahawks dad- I too had terrible headaches at the beginning. Now I've moved onto acne, which dr. King said can occur:( I'll be there in August too! Can't wait to hear your next update.
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Hi folks wondering if you can all do me a favor and I think it will help a lot of us battling insurance companies for coverage- trying to get before and after photos of folks with success on xeljanz and how long they have been on it- this drug is a proven treatment per Dr King for alopecia- it is a shame that the drug prohibits so many sufferers of this disease cannot afford it- u can post here or email me at nancy.bauer@sbcglobal.net thank you!
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Hi Everyone - I started Xeljanz 10 mg a day on July 2nd. I have vellus hairs all over my head! I have just noticed that I have light eyelashes growing in on both top and bottom lashes. And I've got a few light eyebrows growing in. I also have nose hair growing in (I'm super excited about that - no more runny noses!) Will post pictures when I'm a little further along!
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Permalink Reply by AlopeciaDestroyedMyLife on
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Fantastic HS
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Wow that's amazing!! May I ask how long have you had Alopecia? And what type of alopecia?
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Hiya everyone.
Well I haven't been on here for a while as I've been pursuing on finding Xeljanz at a cheaper price and I have succeeded.
So during my last check up with Dr.King in June, he made me aware that other countries whereby Xeljanz is approved and the cost of it is slightly cheaper than the US. One of those places he mentioned was Turkey.
So after scouring the net to find pharmacies in Turkey that stock Xeljanz I found one. I went there last week in person to ensure that it was a legitimate pharmacy (which it was) and managed to purchase a box of 56 for €600 (in today's exchange rate that is $655 or £420). I went to the city of Antalya.
The pills look the same in size and appearance. The pharmacist said that it is only available in larger towns such as Istanbul etc. As Dr.King told me to up my dosage to 3 pills a day, I managed to get 3 boxes for the price of £1200. Cheaper than buying anywhere else.
But there are a few things you need to be aware of:
*Turkey has no formal agreement with the US to accept American prescriptions, but they do want to see it to see that you are required to take the medication. It also helps if you get stopped by customs/passport control to have your prescription.
*There is a government law which permits Turkish pharmacies to send medication abroad, so if you were thinking of getting it shipped over you will more than likely get refused. I tried with the pharmacy and with various shipping companies and they all said the same thing. So you will have to go to Turkey and collect in person.
*They take around 1-2 days to come in if they don't have in stock. I have attached the details of the pharmacy (eczane) but unfortunately they don't have an email or website. Just a telephone number. Their English is poor and I had to write everything down and use Google Translate to get across my point. So if you know anyone who can speak Turkish it will help you a long way as I did before I flew out there.
I know this may not be that helpful to some of you across the pond in the US but it's good to know should you be able to get a flight or know someone who might be travelling there.
I will notify Dr.King so that he can make others aware who travel from Europe or the middle east. Hopefully Dr. King may have more information from others patients of other places to get Xeljanz at a cheaper rate. - Attachments:
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IMAG0221.jpg, 6.4 MB
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