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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 AlopeciaDestroyedMyLife on
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Guys this is not new news, do not be disheartened.
Xeljanz has always been a treatment for alopecia and not a complete cure. It is likely you will have to continue to take the tablets but at a maintenance dose which will be far less than what it took to grow the hair in the first place. The study done on mice with alopecia kept their new hair for a few months before falling out again. I noticed at one 5mg pill every other day my alopecia stopped spreading we may even be able to make it 1 pill every 3 days if not more depending on the individuals circumstances.
As long as you can tolerate Xeljanz you can be on it long term, even for life. The same can not be said of steroids plus you get all the horrific side effects along with it.
There is a chance the immune system will kick back into normal action but for most it will have to be maintained.
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Permalink Reply by nmehta02 on
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Yes, ADML is 100% right. Rmr this can work for some and not others. Just like all treatments out there ranging from steroid shots, to pills, to all other treatments for alopecia. Some people just need a course of steroids and that's it they get all their hair back. So to those on Xeljanz and to those planing to try it don't be discouraged, everyone's body is different and will respond differently. For some people all they might need is the thought they are doing something to combat the condition, just that alone can help mentally and helps restore immune function. I myself dont have all my hair back but just knowing im doing something about it helps me.
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I am so sick of thinking about my hair 24 hours a day.I will never go out of the house without a wig won't even let my family see me without it on! Started my 7 th week on xeljanz was hoping once the hair all kicked in I could go off it because of the expense.Now to find out we will all have to be on it for the rest of our lives.My insurance (anthem Blue Cross)won't even cover the drug for arthritis.My question is do you think we will have to grow all our hair 100 per cent back everywhere before we start trying a maintenance dosage?
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The Kyle Rhodes update is disappointing but not surprising. This medication blocks the signal. It does not eradicate the problem protein in the hair...nor does it re-engineer the immune system to accept the protein. However, with the potential remission possibilities that AA has, I too was hoping for the possibility of remission once the medication was stopped. I do believe that a maintenance level is possible. I also think the maintenance dosage will depend on the individual. For me, based on my results and experience thus far, I think 1 pill a day would be my starting point. If I could do 1 pill every other day, I think that would be great. The safety profile increases dramatically at these dosages.
Here is the important thing to remember...research continues at a much faster pace now. Now that the mechanism is better understood and it has been discovered that this disease has so much in common with other autoimmune diseases, there will be more and more options coming (I know it feels like it can't get here fast enough). Stem cell research is still very experimental and ramping fast. At present day, I believe this is the area of study is our best chance for a cure or long-term remission. In the mean time, we will have more drugs like xeljanz (hopefully safer) to bridge us over until that happens.
There will come a day of curative medicine as opposed to maintenance.
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Permalink Reply by vjensen14 on
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Hi im Victoria im 19 years old and started xeljanz about 4 weeks ago...i have alopecia areata but it is becoming totalis relatively quickly. I am definitely already having regrowth on the xeljanz but my hair is continuing to fall out. I was wondering if and when everyones hair stopped falling out while taking xeljanz.
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Hi Victoria,
It's completely normal for parts of your hair to be in the telogen phase and fall out. The average human head sheds between 50 - 100 hairs a day.
If you are losing entire areas of hair , 4 weeks is a very short space of time and your body still may be getting used to the medication.
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Hi Victori. I am 25 years old and was recently diagnosed with AA which progressed to totalis within 2 months. I too am taking xeljanz now but only for 2 weeks so I can't assume its not working as it is very soon. I am however continuing to lose my eyebrows and lashes at a very fast rate which is disappointing :( I just hope the xeljanz starts working. My only thought and my derm agrees with me is that I am still probably in an active phase of the disease where others might be in remission who it is working faster on. Don't lose hope I am trying not to as well. Keep us updated and I'll do the same
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my 3 month update:
started with au, total hairloss with the exception of a few eyebrow hairs and almost no vellus hair whatsoever.
currently: full brows and lashes, full groin area, beard is filling in nicely on the right half of my face only (very strange, it stops exactly at the center of my chin), patches of vellus hair on arms and legs, nothing too exciting there, and finally this week i spotted the first terminal hairs on my scalp and new ones are sprouting every day.
looks like its working for me. best of luck, everyone. i never thought i could feel this excited about having half a beard
also, i started at 10mg/day, but i'll be on 10mg every other day from here on out for obvious financial reasons. my doctor said a lot of columbia patients are seeing results at this dosage. for what it's worth...
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hello know when will be put has provision the endof the clinical trial and if its treatments of the samefamily will be at disposal for the skinwool? Angela Cristiano and Dr. king plus any news they makeus expect as sheep without could it be treated likethe human ones because of the money and if aweak amount the treatment has could be asolution in the long run thank you to answer mebecause here I have the impression it is every man for himself
iam french sorry my english
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