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Xeljanz Users...Let's Stay Connected Here in 2016!
I want to thank so many for following my discussion link, "My Stanford trial experience, Part 2 (Xeljanz)" throughout the bulk of 2015. I began participation in the trial in late January, got my first RX for Xeljanz in February, and started to see the first signs of regrowth 3 1/2 months in. After the trial ended, I opted to stay on the drug, and now I am a post-trial patient for the doctors at Stanford. I will continue to fly up there from Los Angeles once every 3 months or so to provide them more data with the hope that maybe the FDA will one day approve Xeljanz for alopecia! As long as my bloodwork remains healthy, I anticipate staying on the drug for the forseeable future. I have had no negative side effects on Xeljanz since I started. If anything, it has calmed down my overactive immune system and possibly helped settle some food sensitivities I had been developing last year.
I am starting this discussion because I really hope those of us who are currently on Xeljanz (or are about to begin) will want to keep tabs on each other. I have read some posts on other links where patients stopped or reduced the drug, and their hair began to quickly fall out. However, I DO know that alopecia can go into remission. It did for me from early 2009 until the end of 2012. Four years of spontaneous remission! With no drugs. I hold onto hope that Xeljanz may help push some of us into remission, allowing us to taper back on the dosage for some time without devastating relapse. Maybe that's not in the cards. In any case, we are the lab rats right now! So, we need to look after each other and share our stories--whether they are good or bad. My attached photo shows me a week ago--12/15/15. I will continue to post more photos as time goes by. Please all do the same. Let's band together in 2016 and get some viable treatments approved for this cruel disorder!
XO
Susan
Replies to This Discussion
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Permalink Reply by Susan McAdams on
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Dr. Ko did not have specifics regarding what genetic findings may predict success with Xeljanz or not. It's much too complicated to explain on layman's terms in an office visit. That is why the doctors at Stanford are compiling the data and hope to publish a journal article within the year about their findings from the scalp biopsies.
This new reserach is geared toward furure patients with alopecia who may come to a doctor to see if Xeljanz is a drug that might work for them. The goal of the research from the scalp biopsies is to be able to predict with future patients if they will respond to Xeljanz or not, based on their own genetic makeup. If they can get this reserach published, it will be one step closer for the argument to get Xeljanz FDA approved here in the USA.
Dr. Ko said that nearly all of the patients from the Stanford Trial experienced some form of hair regrowth throughout the trial. After it ended in 4 months, most patients went back to their own doctors, so there is not much information about where they are at today. Some patients, like myself, stayed on as post-patients and continue to see Dr. Ko while still on Xeljanz. He said everyone who is still on the drug has been keeping their hair. Those who he knows stopped the drug, started to see hair loss again somewhere 2-3 months after stopping.
Side effects have been minimal to none with the Stanford group. Nothing serious to report. No major illnesses.
--Susan
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Permalink Reply by Nicolas on
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Thank you very much Susan it's a incredible good news :-)...i'm in my second month and after 20 years of alopecia universal just a lot of face hairs( 50%) and eyelashes(50%), also some in eyebrown(30%)...i take also vitamin d and omega 3 and begun from some days a antinflammatory diet (i had also colitis and in my opinion under all patology can be a inflammation)...i'm very optimist and positive :-)...noone sides effect my children and my wife have had respiratory problems and me also whit xelijanz no :-)))
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Hello Susan, thanks for the info. Do you think that those who don't respond to xeljanz will respond to other JAKs? As I heard from Dr. Angela Christiano that JAKs are definitive tratment for alopecia.
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As I am not a doctor, your guess is as good as mine. But the good news is that there is a lot of activity out there to develop new JAK's specifically for alopecia. I think the drug companies are hoping to hit the jackpot and develop something that works for androgenic alopecia (male-patterned baldness) since that would mean major money from millions of eager patients. We know that the current JAK's aren't working for that kind of alopecia. In any case, that is good for all because with new drugs, that means new opportunities to find one that works for an individual who needs something else. It's all a waiting game. What else is new?
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Correct, well the other new thing is that there are ongoing clinical trails in Europe testing Xeljanz and the results are so promising so far. By the way, I am thrilled that Stanford trail participants all experienced regrowth! Cheers mate for the update.
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Permalink Reply by 3ebdie on
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Where in Europe? I looked everywhere on the internet and can't find any xeljanz trials in Europe for alopecia areata
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Wonderful news, finally also in Europe...now in Europe it's possible buy only in Turkey a nd Russian.I hope make soon ...
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Hold your horses. I haven't seen ANYTHING on the internet regarding trials in Germany....
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3ebdie just because you haven't seen it that doesn't mean there is no trial in Europe. Here is Dr.Bhatia talks about a clinical trail in Europe: http://dermatologytimes.modernmedicine.com/dermatology-times/news/a...
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