Alopecia World
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Xeljanz and Looking Ahead to the Future...
Hi Everyone--
I decided to start a new discussion group for those of us who are taking, have taken, or are thinking about trying Xeljanz. As we all know by now, the medical trials that took place at Yale, Columbia, and Stanford (and, I think another university or two) have demonstrated that Xeljanz helps a large percentage of alopecians. I was told by my Stanford doctor that the success rate is up in the 70-80% range for regrowth. People who have had AU since childhood have gone on to full regrowth (a young friend of mine from this site had that experience and is now focusing on his college studies with a full head of hair). Others with AA or AT have also had great success with the drug. There does not seem to be any correlation between age of onset or whether one's alopecia was genetically with them at birth or developed later as an autoimmune disease (as was my case). Researchers from the trials are now focusing on the individual genetic makeup of patients who participated by analyzing scalp biopsies. Their goal is to try and figure out WHY some individuals respond well to the drug, yet others struggle or do not respond at all.
We also know that drug companies other than Pfizer are working to develop their own JAK Inhibitors that work along similar pathways as Xeljanz, producing minimal-to-no side effects. As we have read in other discussion groups since 2015, few Xeljanz patients experience negative side effects. A rise in cholesterol seems to be the most common among them. Some individuals with other diseases along with alopecia have had different side effects or unexplained relapses while on the drug, but it is hard to figure that out--especially when other medications are used along with Xeljanz for different diseases.
In any case, at the start of this discussion group, I have been on a dose of Xeljanz at 5mg, 2x daily for 2 years, 8 months. I started the drug during the Stanford Trial in February 2015. It works for me.
Our challenges going forward into the future are to keep the lines of communication open as new drugs are introduced. It will likely take a while. And Pfizer has no plans to offer Xeljanz as a treatment for alopecia. For the purpose of marketing and profit, they prefer to keep the drug available only to RA patients.
Let's use this discussion group as a forum to keep each other informed, share if and how one's insurance company decides to cover Xeljanz for alopecia, alert the group to any pertinent research articles or info about new drugs, and most important, support one another in this process. I learned about the first Xeljanz Trial at Yale through posts here on Alopecia World. Had it not been for that discovery, I may have not found my way to the Stanford Trial. I am very grateful for the host of information here and the amazing people I have met along the way.
Here's to a hopeful future ahead!
--Susan
Replies to This Discussion
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Permalink Reply by Starshine on
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I have been on Xeljanz now for 3 years with complete regrowth. Only side effect has been weight gain, which I cannot seem to lose, despite diet and exercise. My insurance is CareFirst, which after speaking with my doctor, is covering Xeljanz at least through 2019. I am also interested in learning if anyone has been successful in reducing the dose or stopping without losing their hair. I really do not want to stay on this drug forever, but I don't want to lose my hair again either.
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Permalink Reply by Kristin on
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Omg, I've also gained weight but never attributed it to Xeljanz. No wonder!
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Hi starsunshine, am happy xeljanz worked for you. I was just looking back will I when adml first put up his xeljanz post. And seen that you was a slow responder on xeljanz.
So could you tell me how long it took you to respond ? And if you used anything else to help the progress along ?
Thank you
Kind regards.
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Permalink Reply by Suzie on
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Sadly to say I dropped my dose from 2 pills a day to just 1 for about 2 months and now I am noticing the effects of new patches. The reason I started just taking 1 was because I was having some stomach issues and since all of my patches were grown in I thought I would give it a try. For me I never have noticeable shedding when I shower. It just seems to have a bald patch one day. I'm now back on 2 pills a day and have to go back to the dermatologist and start the injections again. It really scares me to think that I will have to be on this for the rest of my life and the moment I get off it, I will lose my hair. I just don't understand how it could be dormant since my teenage years up until four year ago when I was 48 and now it's a constant battle.
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Hi Suzie, sorry to hear you began losing hair again after dropping down to one pill a day. I am not happy either about the prospect of being a slave to this drug for the rest of my life, especially since it is so expensive and difficult to get. Would love to hear from others who have tried to reduce.
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Hi Singh, sorry for the delayed response, I overlooked your post. Yes, I did start Xeljanz in 2014, along with ADML. I was a slow responder and although I did see growth after one month, it was very slow and sporadic. I upped to three pills a day after six months and added Plaquenil. After that, the growth really sped up and by one year, I had a full head of hair, although it was very fine. It gradually thickened and continued to really grow in within the second year. The only thing is, my original color never really returned. It came in white and is still a platinum blonde color, but I am older, so that could be why. Are you taking Xeljanz and if so, how are you doing?
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Thank you for your reply ! You look amazing by the way !! Yeh I was on it seen regrowth at 2 pills a day but couldn’t up to theee pills a day plus was only on it for 7 weeks. Do you still take plaquenil? And if you don’t how long did you use it for ??
Thank you
Kind regards
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Hi Suzie,
Were you doing anything else other than the injections? Diet and supplements? I've been on LDN for about 45 days, plus I've completely changed my diet. Gluten free, no dairy or processed food. A little bit of fruit, no sugar or sugar substitutes, alcohol or caffeine. I'm using minoxidil 7% with a steroid twice a day. I'm seeing vellus hairs all over my scalp about 1/4 in now, still no eyelashes or eyebrows but this is the first signs of growth in a year. I'm hoping I don't have to take xeljanz. I, also take a bunch of supplements.
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Carlie a little background on me: had AA as a teenager 35 years ago and was not diagnosed because back then my mother just took me to our family doctor and he had no clue. I remember thinning, not necessarily patches, but extreme thinning that you could see the back of my neck through my hair. It all grew back on its own within a year with NOTHING. No diet change, injections, pills or anything.
Age 26 I developed RA after my second child. After that my hairdresser also noticed a small bald patch on the back of my head but wasn't concerned and either was I cause it was hidden. The patch grew back on it's own and nothing else happened.
RA became so bad that I was put on Enbrel for over 10 years, then Humira and then Orencia. Do not recall experiencing any other hair loss during those times except after the latest drug of Orencia 4 years ago. Began seeing patches and thinning that my new haidresser said it looked like Alopecia. I said what? I googled it and that was my aha moment. I began injections and Minoxidil first and had luck after several LONG months. I resarched everything I could about AA and started several supplements, which I still continue to take, essential oils, diet, etc. There were some stubborn spots which would not fill in so I was forced to see a hair specialist to get me through it. Hair Therapy for Women in Florida. I'm from Illinois and I did my research online. They were awesome. I was able to get hair extensions to tie me over until the growth came back. I then approached my RA doctor and had him prescribe Xeljanz for both the RA and AA. After several months the stubborn spots filled in and finally took color. Been on 2 pills a day since last November. Since both the RA and AA were doing well and I was having stomach issues I decided to go on 1 pill a day and slowly but surely the hair is thinning again. For me I don't get clumps of hair falling out....it just stops coming in, it's a slow process. I don't like the fact that I will have to be on this forever and hopefully my body will accept it. I still have hair, but I have noticed it thinning and I am probably going to see Bobbi in Florida again because my hair still never recovered fully from last year....I'm probably looking at a topper this time :(((
I'm just so frustrated as to why my hair was "fine" all of these years and NOW it's a problem.
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I'm 66 and have never had any sign of hair loss, I've always had lots of hair. Then last year it all fell out over a couple of weeks, then eyebrows and eyelashes went too. Who knows why after all these years.
I have always been thin, I ride show jumpers and am physically fit and healthy but have suffered extreme trauma and stress over the last couple years.
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