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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 Suzie on
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This is so disheartening to hear about some people not responding to the Xeljanz. I cannot say whether Xeljanz was the total reason my hair came back or not. I had AA as a teenager, almost 35 years ago and never knew exactly what I had until it came back a few years ago. It suddenly grew back on its over a course of a year or so with no treatment at all. Fast forward to my late 20's, I developed RA (Rheumatoid Arthritis) after my 2nd child. Years after that my hair dresser told me I had a bald patch on the back of my head that was unnoticeable and it eventually filled in. My RA became so bad I was put on biologics over the years (Enbrel, Humira and Orencia). I was on and off of Orencia and that is when my latest bout of AA happened. My hair was shedding like crazy, lots and lots of patches developed. My Rheumatologist told me it was AA, which I never heard of and that is when I got my aha moment....that is what I must have had as a teenager. I didn't remember losing this much hair as a teenager, but it was so many years ago so I couldn't remember exactly. I decided to go see a dermatologist which began giving me injections. What a slow process that was.......after a year, she told me there was nothing more she could do. I was so desperate I told my rheumatologist I wanted to start Xeljanz for both my RA and AA. After being on it for 6 months all of my patches filled in. It actually started filling in somewhat BEFORE Xeljanz, so I can't say if it would have all filled in or not without Xeljanz; if the Xeljanz speeded the growing or if it actually stopped the shedding. That is the million dollar question for me. I continue to take it mainly for my RA but also afraid that if I get off of it, my hair might start shedding again.
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Permalink Reply by Milana on
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Suzie, thanks for your message. Happy the Xeljanz worked for you. It is indeed frustrating to realize that the most innovative available treatment as Xeljanz, for which I had high hopes, doesn't work with my scalp hair. Its still puzzling to me why the Xeljanz was good for regrowth of my brows and lashes and not for scalp hair.
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Don't give up hope on medical advancement soon. Xeljanz is not the only kid on the block that has shown promise. Ruxolitinib has yet to be tested by users to the same degree as xeljanz. It may have a broader positive result specifically for our condition than xeljanz.
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Is it in clinical trials? What is current
Status?
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Northwestern University in Chicago is running a double-blind research project on what I believe is Ruxolitinib. My son is on Xeljanz and they said if he didn't have good results on it they'd enroll him in their new study which is a medicine different from Xeljanz, hence my hunch it's Ruxolitinib.
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Thank you for your support bibby. You're right Xeljanz is not the only medicine of this kind. I was thinking of trying Baricitinib (not sure if I spelled it right) when it becomes available, and IF affordable. As far as I know Ruxolitinib is much more expensive than Xeljanz and that is a definite stop sign for me.
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Permalink Reply by ChrisPowers on
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It is not my intent to rain on anybody's parade, but this recent study, brought to my attention by my dermatologist, does not bode well for Ruxolitinib:
"Aggressive Skin Cancers Occurring in Patients Treated With the Janus Kinase Inhibitor Ruxolitinib."
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Yes, why it works for some body hair and not the scalp is truly a mystery Milana. Like I said, I'm not totally convinced the Xeljanz worked for me or not. Before I started taking it, I did have some growth, so maybe it helped speed up the process, stop the shedding and stablize it or nothing at all. I know it has helped my RA as well, so I'm extremely thankful for that.
When I was a teenager my hair grew back on it's own WITHOUT ANYTHING...no steroid injections, medicine, supplements, etc. My mother just took me to our family doctor and he was at a loss as to what was causing the hair loss (this was 30 years ago, so I'm sure AA was not as common as it is today). The million dollar question is what triggers Alopecia? And how can we prevent it from happening in the first place?
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Permalink Reply by Rascalx2 on
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I know mine was triggered from an intense, emotional incident which happened as I was coming out of a chronic stressful 2 year journey. I know for a fact that was how mine started... not to say that is what it is for everyone, but at the time I felt I was having a nervous breakdown, 3 months to the day I had a bald patch,.,, now if there was a way yo reverse that .., that is the million dollar question. To hear there is no way to reverse it ,is so defeating! I am being as patient as I can be w xeljanz, right niw it is only hope... cant believe how much i watch the peach fuzz. By the way, does everyone else have zero tolerance to cold water? With no barrier of hair I cant stay in ocean for more than few minutes.. sorry to ramble
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I know my three AA experiences were started by infections inmy head area. Docs have said oh no probably not but exactly three months after I had a terrible jaw infection my first episode happened, it grew back fast, my second was after my wisdom tooth got removed and the socket got infected- wallah 3 months later there you go bald patches - again resolving quickly.... this time I got glandular fever plus an terrible middle and outer infection which ruptured my ear drum, three months later the great shed began..... this time it's basically all come out and is moving towards totalis - about to start Xeljanz but it's not show any sign of improvement like before despite the usual topical plus treatment with methotrexate, cyclosporine, prednisone so Xeljanz is the next step... I think everyone has different triggers- mine seems to be serious infection, other have a stressful incident or period of life, suffer a loss, and for some there seems to be no trigger at all. That's why this condition is so confusing and hard to reconcile- we don't really know why our bodies are doing this..... and if/when they will get better, if they will respond to meds or not..... if it means we are predisposed to other autoimmune conditions... etc... essentially it is an anxiety sufferers nightmare. Sorry for rambling too! It's a release to talk about it sometimes....
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Happy to hear.
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This Book help me a lot in regrowing my hairs. You can try this too http://bit.ly/hairlossblackbookS
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