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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 Danny on
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Have to agree with the name change, it's a bit melodramatic - Alopecia simply does not have the power to destroy a life.
I went AU at 16 so I know where you're coming from, it's not easy. But show some positivity man! If not for your own mental health, do it for the younger people on this board who need someone to look up to and see that it's not the end of the world to lack some protein filament on your head... that's pretty much what it comes down to.
I challenge you to reclaim your life while you are still in this state, because there is no guarantee any of us will be here tomorrow - hair or no hair. So why wait?
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Permalink Reply by skip on
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Bravo Danny!!! Amen....I second that challenge.
Have a great weekend everyone.
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Permalink Reply by Shanna on
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It's wonderful that you've been able to maintain such a positive attitude, but peoples' experiences are unique, and the effect of alopecia on one's life is individualized. Depression is a very common side effect (certainly one I have experienced). Please remember that you aren't privy to the full picture. Yes, we can choose to see the upside to this condition--how it's made us less superficial, less judgmental, etc., but not everyone gets there quickly. Let's support each other here, not criticize.
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Permalink Reply by AlopeciaDestroyedMyLife on
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I suggest you do some research on peoples lives who have been destroyed by alopecia sometimes fatally.
I was extremely depressed , and you know what I did?
I embraced it, I let my true feelings out. I didn't pretend to live in a fantasy world where hair didn't bother me and that it didn't matter because you know what? It did.
I made the wholehearted decision I would not lie to myself and from that I took strength because I was being true to myself .
It may be just hair to you but it certainly isn't just hair to me nor to many others on here.
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I’m not trying to belittle your experience with alopecia and I’m not denying the mental aspect of this disease - but IMO it’s the only part that is 100%-without-a-doubt curable today.
I have been through the depression and had a similar attitude at one time. All I can say is that life is better when you take the steps to lift yourself up and get past it - embracing and wallowing in misery does not make you stronger, only more miserable.
I just think a username change would actually have a significant affect on your self-image, I really can't imagine the pain of having that as my mantra.
Now, I'm sure you won't change it just to stick it to me, but c'mon man you're practically the poster-boy for the forum at this point and are undoubtably a pioneer for our disease. A lot of people (including me) come to this discussion for hope.
My 2 cents, sorry to ruffle any feathers on here. I wish you the best of luck and can't wait to see your progress!
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I totally agree with ADML. This dissease has destroyed my life emotionally and financially.
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Guys... Truly sorry if my name change suggestion was perceived as insensitive or sparked any insensitivity.
This has been a hellish experience for all of us and anyone who says otherwise is superhuman. Just trying to put a smile on a typically downer subject.
This Xeljanz break-through (which I really believe it is) gives us all a lot of hope. And I firmly believe within a year it will be approved by the FDA for Alopecia. Aka: light at the end of the tunnel. :)
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Permalink Reply by DJ88 on
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Isn't something suppose to happen in May with the Xenjanz research? Like some time of Announcement or something?
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I haven't heard of this! Can you post any article or info you know of? :)
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Nothing has been changed on the study info.
https://clinicaltrials.gov/ct2/show/NCT02197455
I don't think results will be published until August/ September if it is to be concluded in July. They may do a blurb on how it's going between now and then, but not a full release.
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@ DJ88 maybe you had this in mind: (starshine's post on an email exchange with dr king in january)
I was lucky to get a response from Dr. King regarding an inquiry as to the results of the initial trial for Xeljanz. I had spoken with him at the onset of the trials which is the only reason I think he responded as he is not taking any more calls or e-mails regarding this subject. I asked him if he thought the results so far warranted trying the drug as the cost is so high. His response was as follows:
"The results of the initial group of patients will not be tallied until May. I can tell you that folks are growing hair, not everybody, but many."
http://www.alopeciaworld.com/forum/topics/dr-king-comment-on-xeljan...
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