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 DemianFaust on
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Hi, I live in San Diego. Do you know of any good specialist for Alopecia Areata/Universalis in California that would also prescribe Xeljanz? Do you have any side effects? I read that they could be pretty severe? Do they say that if you stop, all your hair could fall out? Thank you so much!
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Permalink Reply by Susan McAdams on
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As I wrote above, my doctor in Los Angeles--Wendy Madkan in Santa Monica--is not only prescribing Xeljanz, but working hard with o surance companies to appeal for coverage. I am waiting to see what my Blue Shoeld of CA PPO does with her appeal. If you can make the trip up to Santa Monica, let me know, and I'd be happy to meet for lunch!
--Susan
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Thank you so much for your response, Susan! I sent you a friend request and as soon as you accept me, I will write you my phone number, so that we could meet for lunch when I am there. I will also write a few additional things. Thank you again for all you do :-)!
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I also live in Southern CA. I'm going to try one last time with my docs to get Xeljanz. It looks like I have access to new doctors this year at Loma Linda University, so I can try them next. If that fails, I may have to look into a PPO (it's pricey) to see anyone else. Right now I have Blue Cross Anthem HMO and a small pool of doctors to work with.
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If you go over the research and read posts from members here on Alopecia World, you will see that side effects have been minimal to none. One issue many of us are complaining about is weight gain, so I have started a low dose of Thyroid medication (due to some slowing down--possibly from the Xeljanz), and I am being very vigilant about my diet and exercise. Adding in more weight training versus straight cardio has helped. I sadly have to cut back dramatically on that evening glass of wine. I try to keep alcohol down to one or two nights a week. In the past 4 weeks, I have dropped 5 of the 12 pounds I put on in the past year. Although, I DO miss that nightly glass of wine!
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Permalink Reply by Jen on
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Susan, very happy for your results, but worried for you and anyone else on Xeljanz. We don't have any idea what the long-term effects of these drugs are. You are a brave person and I completely understand your motivation. However you are shutting down an entire chemical pathway of your immune system and risking serious infection and cancer by doing so. What you are doing is your own research on yourself which is fine for you, but be please be honest/careful with yourself and especially other people about the possibilities. In private messages on this page I have heard of people going to the hospital with intestinal tears from Xeljanz. Here's the safety profile on the website http://m.xeljanz.com/about-xeljanz/clinical-trial-results Everyone must weigh these risks for themselves and their loved ones.
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Permalink Reply by Kristin on
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I don't think Susan is on a campaign to get folks to do something they don't want to do or spread misinformation.
She's merely sharing her experience, and her experience so far doesn't include intestinal tearing, cancer, or infection.
Folks will always work with their doctors on this. Personally, I get lab work done every three months to monitor any changes in my body.
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Super happy for and in fact jealous of you all with hair, but I also think it would be more responsible when someone asks about side effects to not gloss over the possibilities with sentences like "If you go over the research and read posts from members here on Alopecia World, you will see that side effects have been minimal to none."
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Sorry, Jen. I am not trying to gloss over anything. This is my 3rd discussion page since I participated in the Stanford Trial back in February 2015. Another Alopecia World member, ADML, also documented his experience on a different trial that started before mine. Those discussion pages are still up, and in them, there are many, many posts about possible side effects, warning labels, etc. Also, some people sabotaged the discussion pages to launch into lengthy dialogue about how and where to get Xeljanz illegally in other countries or from other memebers of this site. It started to become counterproductive for those of us who were just starting the drug, and in some cases antagonistic. Feel free to check out those discussion pages because there is some very valuable information imbedded within them.
I launched this page recently because I had been off the site for awhile due to a really busy year with work and family. People were sending messages to check on my current status, and a few people outside of this site were given my phone number by my doctor to ask me questions about my experience on the drug. So, I figured, it was time to launch a new discussion page.
There are several interviews with Dr. King from Yale out there on the internet. A couple are YouTube videos. Dr. King, as you may know, is one of the doctors who started these trials. He now has well over a hundred patients on Xeljanz. In his interviews, he states that to date, he has not had any patients with serious side effects that he can attribute to Xeljanz. The two common complaints are acne flare ups and weight gain. Of course, no one knows what longterm effects could be. No doctor nor patient can predict that, as is the case with any medication for any medical issue. The best anyone can do is observe and report side effects as time passes. Dr. King is still prescribing Xeljanz (as are more and more dermatologists) because since it became FDA approved in 2012 for RA and then prescribed off-label for alopecians around 2014, noted side effects have been minimal. Any statements I have made are based on Dr. King's findings, my Stanford doctor's fondings, as well as the dozens of comments by alopecians here here on AW who are using Xeljanz for hair regrowth.
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Jen--
I respectfully appreciate your comments and information you provided, but I need to make something very clear here. I am NOT endorsing nor encouraging anyone on this site to try Xeljanz if they do not feel comfortable with doing so. As I stated in the first post of this discussion group, it is for patients already on Xeljanz or those who are seriously considering getting on it for their own personal reasons. Everyone on Alopecia World has read about the possible side effects of the drug, and those of us who got a prescription did so on our on accord, with NO coercion, no pressure, and no endorsements from anyone. Yes, I chose to be a participant in the Stanford Trial back in 2015. I did not know what side effects might occur. I have continued to visit my doctor at Stanford as a post-trial patient for the past two years so that I can learn as much as possible about statistics on Xeljanz patients, side effects that have surfaced, and new drugs on the horizon. That is the goal of this discussion group. For Xeljanz patients to share their experiences so that we can observe how this drug plays out over time. In addition, I am not pushing an off-label drug irresponsibly, as you suggest. The only reason Xeljanz is off-label to alopecians is for profit on the part of Pfizer. The drug has been FDA approved for RA since 2012, and ads appear in magazines and TV. Should RA patients be put under the same scrutiny for taking Xeljanz, then?
Most autoimmune drugs are JAK's which all do virtually the same thing. The differences lie in the Pathways upon which each drug works. I have already pointed out that Pathway 2 has links to blood disorders. Yet, I would never tell a person stop taking a drug that works for them. I simply pointed out the research and warnings that my Stanford doctor told me about related to Pathway 2.
I hold onto hope that future JAK's in development will streamline into single pathways that are safer. My ultimate hope--as is the case with most of us--is that stem cell therapy will be the treatment of the future that will not only help, but possibly lead to cures for so many devastating autoimmune diseases. We're not there, yet. So, we seek what is working at present and take the risk that goes along with it.
For those of you coming across this discussion page, please be aware that no one here is pushing Xeljanz on anyone. It is an individual, very personal choice. No one is profiting from our posts. We KNOW about the warning labels. This has been documented all over Alopecia World and in the broad research.
Good luck to you however you choose to treat your disease. But please do not suggest that anyone here is trying to recruit new Xeljanz patients. We are here to share our experiences while on this drug for better or worse.
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Thanks for clarifying your position. We still don't know what pathways are dangerous long-term. Maybe 2 is immediately dangerous, maybe 1 and 3 take time. Your initial post says "As we have read in other discussion groups since 2015, few Xeljanz patients experience negative side effects." I'm saying that initial post might have included some kind of disclaimer for the newly diagnosed or new to this page about what's possible. Your case will certainly be inspiring for some people to try Xeljanz, it's fantastic that you have recovered your hair. I truly wish you the best.
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