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 Football fan on
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Thanks everyone so glad I found this site! I don't want my family to know how upsetting this is for me! They don't even know I'm on xeljanz I was hoping to surprise them and take the wig off and have hair.i can do 3 pills a day for maybe 4weeks if that will help.No vellus hair yet but last time my hair fell out and regrew to about 60 percent (last year) just started coming in dark right away.I was in a falling out stage when I started on xeljanz so maybe that takes a few months to stop before it starts re growing.Everyone is so different!
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I was in the exact position. Two Xeljanz just didn't cut it. I knew I wasn't obsessing, I knew it wasn't a matter of me being impatient, I knew it. So after 3 months of two pills a day, I took like a good week or two at 3 pills a day noticed my hair loss was minimal. So after that 4th month, I went to my rheumatologist and discussed my plans, I was doing all the research I could trying to get Jakafi. Xeljanz wasn't covered by my insurance under any circumstance and Jakafi is. So my plan was pretty straight forward, try to get Jakafi through insurance, but the chances were low so I had a back up plan. I was going to get ruxolitinib phosphate powder in raw form. My cousin is pharmacist who was willing compound it for me (after a serious talk discussing the dangers). Instead of getting the Jakafi prescription written by my dermatologist or rheumatologist which would raise a red flag to my insurance coverage, I went to a hematologist and gave her a run down of my entire situation. I basically gave her a biology lesson on alopecia and discussed the clinical studies and everything ongoing at Columbia. This hematologist wrote me the prescription. SOMEHOW, the stars aligned and the prescription was accepted without any prior authorization. I've been on it just under 4 weeks, and so far the results have been everything I waited for with Xeljanz. I've never had this much hair on my arms or thighs, but I do admit it started (very very lightly and gradually) with Xeljanz. The diffuse areas on my scalp seem to be getting much darker and fuller. Vellus is popping up in bald spots. My shedding has completely stopped. Everyday I see new hairs on my limbs. I am at 15mg twice daily.
So what to take from this: in my experience Jakafi is superior as it inhibits JAK1 and JAK2 and I was fortunate to have it covered by insurance. Xeljanz had way more potential at 15mg or higher. The 4 months I was on it were all free (copay + free sample from rheumatologist) as my insurance does not cover under any circumstance. I definitely do not condone going out and ordering the raw powder and consuming this without professional guidance, and even with this guidance it is risky. My suggestion would be to try to get Jakafi prescribed. If it doesn't work, I would apply for the Xeljanz hardship, if it is successful, then all you have to do is pay $2500 for the supply of Xeljanz to cover the 3rd pill which would last two months (half bottle per month).
I really can't wait for the day a JAK inhibitor is FDA approved for alopecia, it's so frustrating to see the hardship in simply acquiring the proper medication in the first place. I'll keep you guys updated. Good look to you all.
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Permalink Reply by kimberj on
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I'm wondering if Plaquenil or Methotrexate would help. I was on 200mg twice a day for several months and I had lots of vellus hair. By the time I started taking Xeljanz, I already had a head full of white hair.
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I definitely agree with this. If I were to go back in time I would do something like this. I like to think of it as a form of shock therapy for the immune system, ultimately making Xeljanz much more effective.
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That was our approach but it was by accident. Our daughter was on methotrexate for 8 to 9 months and then switched to xeljanz va dr king. The results have been truly amazing.
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Katie girl! I'm with you on the acne. The dr. Said an antibiotic will calm it down, but I didn't want to add any more medictIons- so I'll deal with it for now:(
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That's how I feel. I never even took a Tylenol before starting xeljanz! I figure if I have hair I can deal with the acne lol
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I have the same issue with the acne too! But does anyone else have stomach issues?? I've been on it for 10 weeks now. I notice my body does not like certain things when I'm on xeljanz and wants it out ASAP.
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Permalink Reply by serg navaro on
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Anyone on here by any chance get their prescription through catamaran rx? My insurance is still "processing" and it's under review, I received my co pay card already but they won't let me use it until my insurance says something
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Permalink Reply by Megn on
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For those that have been taking Xeljanz and experiencing acne, would you please tell us where?
Is it on the face, if so all over or certain areas?
What about acne on the chest and back?
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Permalink Reply by Jckah on
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I developed a little acne on my face but really bad on my chest, basically looks like blisters.
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Ok, I am an esthetician WITH AU......FedEx is delivering my Xeljanz today.
As a woman with AU and in skin care (for 15 years) I am going to take a really close look at how to treat any breakouts. This side effect (while minor) cannot be a new norm for me.
I am hoping not to get acne, but believe me, if I do......I will find a safe solution other than more oral meds.
Blister-like acne? That sounds painful! I wonder what part of the medication mechanism is causing people to get acne. (men and women?)
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