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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 James 2me on
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Are you Useing the cream or the Celljanz tablets it appears the cream that is out on Market is not the same as the one they Havnt quite finalized at columbia U. They are still working on it and expect it on Market next year you really can't compare the topical to the pills good luck
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Permalink Reply by Susan McAdams on
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Hi Folks--
I am so glad to see so many positive results for people, as well as sharing info on the new JAK's that are being developed or older ones that might possibly get approved.
I am writing because I am wondering if anyone has new info to share about relapses while on Xeljanz. I know there were a couple women on this site who said they lowered their dosages and started losing hair again. That is to be expected. But, I also remember a woman saying she was on 2 5-mg pills a day, had lots of new regrowth, and then during a period of stress had a relapse and started losing hair agin. While ON her normal Xeljanz dosage.
I haven't heard much on that topic since. Does anyone have info to share? I have been asked about it frequently, and am curious myself. Does anyone who had a relapse while still on their regular Xeljanz dosage have current info on whether their hair grew back, and if so, when? This is obviously a topic of concern for most of us who continue to take Xelajnz and pay the crazy prices.
Thanks,
Susan
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Hi Susan-I'm the one who had the relapse while on the same dosage of Xeljanz.
I started taking xeljanz 2, 5mg per day from July 2 2015. My hair was growing at about the same rate as everyone else's reports until March 2016...then it started shedding..
I should note that at that point I was also growing eyelashes but not dark eyebrows.
I think around the same time in March I had stress and I introduced another medication, but for the life of me right now I can't remember what it was.
I stopped it as soon as my hair started to shed, but the shedding has not stopped, just slowed down. I only had maybe 50-60% of my scalp that had white regrowth. What is left from that is long now, and the rest of my scalp is covered in baby white and dark hair.
I did start seeing a dermatologist who has injected my eyebrows with kenalog and I am happy to report that has been very successful. I still have eyelashes.
I just don't have a full head of hair.
I'm still taking the medicine. And I'm about to add Plaquenil to my daily meds.
Keeping the faith!!
Heather
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Noone trying to no have relapse to change its alimentation(making a antiinflammation alimentation) and use any vitamins like vitamin d, biotin, omega 3???
And also change its life style making meditation and sports?
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No relapse for me...it's been over 2 years now. 2 pills a day still until next month...I will reduce it to 2 pills one day, 1 pill the next. There are more and more treatments getting explored. This is far from being the end game. I believe this will be one of the first autoimmune diseases that they come up with a solution to put it into remission. Of all the well known autoimmune issues out there, I feel like this could be one of the least resistant to remission...with the right treatment.
The frustrating part is that everyone is different...so it's difficult to put personal expectations in place around individual stories.
I am very satisfied with my results, but I do have a couple areas of resistance...the biggest part being my legs.
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How severe was your Alopecia nd how long did you have it also how long before you saw results. I am at 3omths today and take two pills a day facial hair comeing in steady but nothing on head or body yet I went Au really fast it's been 10 months now starting to worry because of no scalp hair as of yet
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I was AU for over a year at the age of 39. I had AA on and off since I was 22...usually very minor then. I probably did not see solid results forming until the 6th month. Things progressed faster after that. I still have a couple areas on my head that are resistant and my legs are only 35% covered. The scalp hairs came in clear before getting any pigment so they are difficult to see at first...it was slow for me on the scalp also. Facial hair came in first. Hope this helps.
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It surely does help and gives me great hope. Thanks for responding well appreciated.
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I'm in my second month (au from 20 years) and also to me now a lot of hairs in face (also eyelashes)...i hope also i can have your results :-) ...i'm also making a antiflammatory diet (integral arroz, miso wakame-curcuma-kuzo and humus) and taking vitamin d ...
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Hey guys,
I hope you all are doing well.
I have been reading this thread for a while and the time of sharing my progress just come. I started to get 10 mg a day of xeljanz from 26/11/2015 until 29/3/2016 around 4 months. My dermatologist noticed that I had high level of cholesterol so we get down to 5 mg a day in case it is the cause. But when I go back to old test I found that I already had high level of cholesterol. Anyway I am going to have some test next week that will clear everything off. I am taking omacor "omega 3" to get the cholesterol down. Regarding my growth process, it gets slower since I get only 5 mg a day, but it still great.
I attached you pic for the whole progress to see how it is developed.
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image.jpeg, 885 KB
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this the first one. it didn't uploaded with the text
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image.jpeg, 845 KB
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Wow, that is a fantastic response. You may be just fine with one pill a day once all your growth is in...which looks like it just about is. I am looking to go down to a 2-1 dosage...2 pills one day, 1 pill the next. I think once you get the growth you want, it's a matter of figuring out the lowest dosage to keep it. Best of luck.
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